Tag: End of Life Care

Posted on

I will never forget my grandma’s last days, surrounded by people who were half shaman, half scientist, and all good

We expected Nana to die years ago. When she finally went, it was both sadder and sweeter than we were prepared for

By

I knew it was coming; I had known it was coming for years. I had seen my friends go through it, and I had spent many hours thinking deeply about what would happen. Comforted by theories on the nature of consciousness, seduced by feasible rationales for an afterlife, sobered by the practical science of what was really going to happen, I was prepared. And then she died.

My nana had been ill for a long time. Her final diagnosis, chronic obstructive pulmonary disease, came 12 years before she died, although the prognosis was no more than four. She had come close so many times that we had started calling her “the boomerang”. But when she went into hospital for the last time, although in our heads we constructed logical expectations of her coming back to us, in our hearts we knew she wasn’t coming home.

Losing someone close to you is something you can only really talk about once it has happened. All the cliches about grief that I had heard over the years became my reality. Half an hour after she died, my cousin Elliot and I sat in the hospital coffee shop, exhausted, paralysed, silently delirious, while a tiny white butterfly fluttered around our heads, flew a full circle above us and disappeared. Over the next week, the appearance of white butterflies comforted each member of my family at different times in some ineffable way. Despite our wildly varying degrees of faith, that delicate symbol soothed us with an understanding that she was OK: whether she was on a cloud with her brothers and parents, united on an unknown spiritual plane with a greater force as part of a universal consciousness, or just gone, she was no longer in pain.

It was very sad, of course, and that is the best it was ever going to be. The reason I say “the best” is that, if it were not for the acutely careful preparations of us all, including Nana, it could have been far worse.

Palliative care should not be as taboo or scary as it is to many of us. I would go as far as to say that it is the ultimate in wellbeing practices, when a person’s health has failed and all that can be done is care. The word “palliative” comes from the Latin pallium, a cloak, and in many ways this metaphor is apt. In the last days, a “syringe driver” delivered her a steady flow of morphine and anti-anxiety drugs that concealed the worst of her symptoms, shielded her from their effects, protected her from the pain, and even hid her from death for a few more hours or days. If she had not had that, she would have died of hypoxia on the Thursday, gasping violently for breath as she drowned in carbon dioxide that her lungs were too weak to exhale. Instead, she went on until the following Tuesday, my auntie’s birthday, not before she had me write in her card: “Life is worth living because you’re my daughter.” When she finally passed, it was a moment of peace.

(Note to doctors: if it could be called anything other than a “syringe driver”, I think everyone would be much happier. My bampy (grandfather) in particular was unnerved by the name and was initially convinced that it was going to speed up her death.)

On the Saturday, when we all first expected her to go, we played her favourite songs at her bedside: lots of Maria Callas and Ella Fitzgerald, and (who knew?!) Hot Chocolate’s No Doubt About It, a song that recounts Errol Brown’s alien visitation. We were gifted the time to rejoice with her in what made her joyful, emotional and eccentric. As she appeared to slip away, our tear-stained faces fixed around her in uncontainable smiles, sure that the hour had come, she boomeranged back again, just in time for The Chase.

Memories of moments in her final days are precious and I am gratefully aware of how lucky my family and I are to have had them. They exist because of palliative-care specialists. What a mystically unique role: part scientist, part shaman; half doctor, half priest; with careful words held equally as important as the careful drugs. Never hard-heartedly functional, and never “compulsively positive”, it is as if they are of the same station as midwives, just on the other end. I am profoundly moved by this practice. The UK is reportedly the best in the world at end-of-life care, which is cause to be proud, and there are calls from both the International Association of Research in Cancer and the World Health Organization to declare palliative care a human right.

As someone whose first close bereavement was sort-of-sweet-sad but without regret, I support these proposals wholeheartedly. I wish that all people could be treated with such deep compassion and humanity. I sincerely hope that, when it is my time to die, my family and I will be helped to prepare in the same caring, tender way that my grandmother and family were in Llandough on a long weekend in July.

Complete Article ↪HERE↩!

Posted on

Physician-Assisted Dying…

Even When Legal, Difficult to Achieve

By Roxanne Nelson, BSN, RN

When Maine passes a law allowing physician-assisted dying (PAD), it will be joining nine other jurisdictions in the United States.

By October, one in five Americans (22%) will have a law that allows terminally ill patients, most of whom have cancer, to choose an end to their life with medical help from a doctor.

However, the practicalities of actually doing so are formidable, and patients who choose this option find there are many obstacles in the way.

First is finding a doctor who will participate. Many doctors have moral objections to PAD, refuse to participate, and will not refer patients.

This sounds familiar to Charles Blanke, MD, professor of medicine at the Knight Cancer Institute at Oregon Health and Science University in Portland, who has been participating in PAD since it was legalized there in 1997.

Blanke says patients have told him that after being turned down by their physician, they also were not given a referral; instead, they were told by their doctor that “they don’t know anyone, and good luck finding someone.”

I believe this is patient abandonment.
Dr Charles Blanke

“I believe it is patient abandonment,” Blanke told Medscape Medical News. “For some patients, it takes them months to find me, so it’s no wonder many are too ill by then to proceed.”

In general, eligible patients say that PAD was not offered to them, Blanke said, but he argues that “it is legal and should be put on the table.”

He emphasized that physicians should never be pressured to participate in PAD, but they should refer patients. “We need to make it more patient friendly and more accessible.”

For years, Oregon was the only state that allowed the practice.

In recent years, however, other states have passed similar laws — Washington in 2008, Montana in 2009, Vermont in 2013, California in 2015, Colorado in 2016, Washington, D.C. in 2017, Hawaii in 2018, and New Jersey just a few weeks ago.

Lack of Training

That some doctors do not want to participate in PAD is understandable; many have moral objections to the whole idea, citing the Hippocratic oath to ‘do no harm.’

But there are signs of a shift toward more acceptance.

For instance, a 2018 Medscape ethics report found that 58% of doctors who responded to the survey said physician-assisted death should be available to the terminally ill, similar to 57% in 2016, and up from 54% in 2014 and 46% in 2010.

However, doctors who are willing to participate find it difficult to do so.

“The law makes no provision for medical training, there is no formal system, and I believe that is one of the major barriers and a shortcoming of the law in every state where it is legal,” said Lonny Shavelson, MD, a California physician based in the San Francisco area who specializes in aid in dying. He founded Bay Area End of Life Options in 2016.

“I agree that sometimes there is a moral objection, and there is sometimes institutional resistance, but most commonly it is lack of training,” he said.

Doctors, as a rule, like to do things they’ve been trained in.
Dr Lonny Shavelson

“Doctors, as a rule, like to do things they’ve been trained in and don’t like to do things they haven’t been trained in,” he added.

He noted that his practice has received more than 800 requests for medical aid in dying from different patients throughout California.

“Every patient who comes to us does so because they can’t find another doctor,” he said. “Everyone thinks it’s because of moral objections or that the patients live in rural communities, but it’s not the case for most of the patients.”

Shavelson told Medscape Medical News that he always calls the patient’s doctor, and most of them are not morally opposed to participating in PAD. “But what they tell me is that they’ve never been trained and that they don’t know anything about it. They don’t know what medications to use, or anything about the paperwork or protocol,” he said.

Barriers To Access

“The great news is that we have 22 years of data in Oregon, and the law is protecting patients,” says Kim Callinan, CEO of Compassion & Choices, the largest national advocacy group for aid in dying.

“But we also have robust data showing that the law is not meeting its intentions and that we have erected too many barriers for many to access it,” she told Medscape Medical News.

Callinan believes that improvements are needed to allow the original intention of the law to take place. “We want to keep the right safeguards in place,” she said. “But we are seeing such small numbers of people using it, and in many cases it’s because they can’t get access.”

Recent reports confirm that the number of patients who have chosen PAD — and who have completed the process — remains small.

For example, data from Oregon show that from 1997–2018, prescriptions have been written for 2217 people, and 1459 patients have died from ingesting the drugs.

In California during a single year (2017), 577 individuals received prescriptions and 374 people died after ingesting the medication.

Shavelson feels the actual demand for PAD is not reflected in the current statistics, and the numbers would probably be much higher if there was more access to physicians.

He argues that a more accurate survey would be to identify how many patients have requested PAD but could not find a physician to help them, he said. Shavelson believes that number would be significantly higher than what has been documented.

Institutional Barriers

In some cases, it is not the physician making the decision but the healthcare system.

A recent survey of 270 California hospitals, conducted 18 months after implementation of the state’s End of Life Option Act, found that 61% of hospitals had a policy forbidding physicians to participate (JAMA Intern Med. 2019;179:985-987).

“We found that of the 164 hospitals in California that opted out, 56% allowed physicians to refer patients to another provider and 29% of hospitals did not provide any guidance on this question,” said lead author Cindy Cain, PhD, assistant professor in the Department of Sociology at the University of Alabama at Birmingham.

“I support the idea that a health system can opt out,” says Peg Sandeen, PhD, MSW, executive director of the Death with Dignity National Center, a nonpartisan, nonprofit organization. “As much as I don’t like it, and think physicians should be free to practice, the health system has that right to do so,” she said.

However, not referring patients is an entirely different issue. “The outright act of refusing to refer a patient puts the physician into an ethical quandary,” she said. “Referral is part of how medicine is practiced, but it is up to the individual physician to make that determination.”

Waiting Times Present Another Barrier

The whole PAD process requires two oral requests with a waiting time of at least 15 days between them, and also a written request using the statutory form included in the state’s aid-in-dying law.

There are slight variations among states (eg, Washington, DC also requires two witnesses). Many states also require a second waiting period, in which the physician must wait 48 hours from the time of receiving the written request to write the prescription.

Callinan believes that the waiting periods, as well as the need for two doctors to confirm eligibility, are redundant in some cases. “The eligibility is that a patient has 6 months or less to live, and 2 doctors have to certify that,” she said.

“But if someone is already enrolled in hospice, as many are, it has already been determined that they meet the 6-month criteria and that the decision has been made to forgo treatment. In this case, they should only need one doctor to authorize it,” she argues.

A new law in Oregon may cut some of the waiting time, as it allows physicians to make exceptions to the waiting periods if the patient is likely to die before completing them.

“Oregon law has not evolved since it was written 20 years ago,” said Blanke. “This new bill will eliminate the waiting period for those who are imminently terminal. It won’t affect very many people, but it will help a few get quicker access.”

Shavelson praised the new Oregon law. “I think the 15-day waiting period is obscene because it’s not 15 days,” he said, explaining that it may be more like 3 or 4 months, as patients have to find a doctor and then may have to wait weeks for an appointment.

“The idea was that it was supposed to be a period of contemplation, but many patients have been contemplating since they got their diagnosis,” Shavelson pointed out. “They didn’t start thinking about it when they first made their request — they have been thinking about this for a long time.”

Patients in this waiting period may be dying or losing the mental and/or physical ability required for self-administration of the drugs, he explained. In his own clinical practice, about 30% of patients die during the 15-day waiting period, he estimates.

This is a similar proportion to that found in recent study from Kaiser Permanente Southern California, where one third of patients became too sick or died before the process was completed (JAMA Intern Med. 2018;178:417-421).

Accessing and Taking the Drugs

Even for patients who do manage to get through the bureaucracy, there are challenges in the practical steps of actually obtaining the drugs. A physician can only write the prescription and it is up to the patient to procure the drugs.

When states began to first legalize PAD, the drugs of choice were oral pentobarbital and secobarbital. However, as of 2015, both of these drugs have been largely unavailable, as previously reported by Medscape Medical News.

Through trial and error, a group of physicians eventually developed a drug regimen (DDMP2), which contains diazepam 1 g, digoxin 50 mg, morphine 15 g, and propranolol 2 g. It is more complicated than the barbiturates but has been found effective.

Shavelson explained that an updated version known as D-DMA (no propranolol and amitriptyline 8 g added), which is both faster and more reliable than all other protocols, is in the process of replacing DDMP2.

Both formulations are compounded by a pharmacist and available as a powder, which then must be mixed with 4 oz of apple juice and taken as a liquid/suspension.

Shavelson noted that physicians may not know where a patient can fill the prescription.

“It’s not something that can be filled at the local CVS or Walgreens,” he said. “A regular pharmacy doesn’t have the ingredients on hand, and for the DDMP2 combination, it has to be compounded.”

In California, two pharmacists currently fill about two thirds of the prescriptions. “Pharmacists need training as well,” Shavelson contends. “They are an integral part of this process.”

Even the last step in the whole process, the actual ingestion of the drugs, can be difficult for some patients.;

State law requires that the lethal dose be self-ingested via the digestive tract (orally or through an nasogastric (NG) or gastrostomy tube). The restriction that the drugs must be self-administered was to help ensure no one could harm a patient against his or her will.

However, many terminally ill patients are so sick they can’t physically mix the solutions, pick up and take the medicine, or swallow the drugs. Blanke estimates that around 10% of the patients he has evaluated have swallowing issues, and they fear that they will be unable to swallow the medications when they are ready to die.

To get around these practical difficulties, a proposed bill in Oregon sought to allow patients to self-administer intravenous drugs.

“There are many people who cannot swallow or administer through an NG tube, so just pushing the button on a pump syringe would allow them to take the medication,” said Blanke. “The IV could be put in right before they used it.”

Putting in an IV is easier than an NG tube, he explained, and much less invasive than a gastrostomy tube. “There’s really no difference between them, as far as putting medication in,” Blanke said. Both require some intervention and hold the same risk that someone else can administer the drugs.

Although the bill passed through the Oregon House of Representatives, it stalled in the Senate and has not moved forward. Some opponents of the bill feared that it would move Oregon closer to allowing euthanasia, while others cited the high cost of pump syringes.

Blanke believes that much of the opposition was really directed at the concept of assisted dying. “The arguments were with Death with Dignity,” he said. “Not the idea of making changes in the law or the use of an IV.”

The practical difficulties of PAD in the United States contrast with a much simpler process in Canada. Since 2016, Canada has legalized medical assistance in dying, which allows for both physician-assisted euthanasia and self-ingestion of a lethal dose. Patients have overwhelmingly selected physician-assisted euthanasia, where the lethal dose is administered intravenously by a clinician. According to Health Canada, of the nearly 7000 Canadians who have chosen to end their lives since the law went into effect, only six people have opted to self-administer drugs.

Physician Education and Training Needed

The biggest barrier — and the most imperative need — is physician education and training in PAD, argues Shavelson.

“Traditionally, teaching happens at large institutions, medical schools, universities, academics — but they won’t touch this,” said Shavelson. “They don’t want their reputation so-called ‘sullied,’ and are frightened that their reputation will take a hit. I don’t think that’s true, and I think people would feel that it’s a good thing to have medical centers more involved in this.”

Academia has fallen down on their responsibility, he contends. “This is a legal medical procedure and there is not one medical institution in my state [California] that is doing formal training on this. It’s not part of any conferences or any continuing medical education.”

As an example, the University of California, San Francisco, forbids palliative care residents and fellows from participating in aid-in-dying practices. The end result is that there are palliative care fellows coming out of training who have no experience in this area.

“Their patients will be asking about it, since palliative care doctors get asked about it more than any other specialty except for oncology,” said Shavelson. “So we will have palliative care and hospice doctors who have no training in it, and that’s absurd. This is part of the realm of what they are going to have to deal with in their practice, and institutions have forbidden it.”

However, next year the first conference for clinicians on medical aid in dying will be held in Berkeley, California, and will really delve into the nuts and bolts of practicalities, Shavelson explained. “The topic has come up at conferences, and there have been other gatherings to discuss it, but the focus has been on policy and ethics.”

This new meeting, called the National Clinicians Conference on Medical Aid in Dying, will provide an opportunity for clinicians to learn about bedside practices and share information.

“We need this clinical conference,” Shavelson added. “We are going to make education happen.”

Complete Article ↪HERE↩!

Posted on

The Cost of Dying in All 50 States

By Gabrielle Olya

There are many reasons to celebrate getting older, but having to think about the cost of death isn’t one of them.

For starters, funeral costs can add up fast. The National Funeral Directors Association cited the median out-of-pocket funeral expenses for 2016 — including viewing and cremation costs — at $7,360. On top of that, the average out-of-pocket expenditure for end-of-life necessities is $11,618, according to the National Bureau of Economic Research.

One of the biggest factors impacting funeral expenses — and the cost of dying, in general — is the state where the death certificate is issued. Just like the cost of living, the cost of dying depends on where you reside.

GOBankingRates calculated the average costs for end-of-life medical care and funeral expenses in each state by multiplying the national averages for those services by every state’s cost-of-living index. The study also considered 2018 inheritance tax and estate tax data, sourced from the Tax Foundation.

50. Mississippi — $18,509

Average funeral expenses: $6,684
Average end-of-life medical costs: $11,825

The cheapest state to die in, Mississippi, has no estate tax or inheritance tax. Average funeral expenses total $6,684, and average medical costs associated with dying come out to $11,825 — both well below the national average. This is unsurprising because Mississippi also has the cheapest cost of living in America, according to a separate GOBankingRates study.

49. Arkansas — $18,681

Average funeral expenses: $6,746
Average end-of-life medical costs: $11,934

The cost of dying in Arkansas is similar to that in Alabama. Funeral expenses in Arkansas average $6,746, while medical costs associated with dying hover around $11,934. The state has no estate tax or inheritance tax.

48. Oklahoma — $18,702

Average funeral expenses: $6,754
Average end-of-life medical costs: $11,948

Medical costs associated with dying in Oklahoma are typically around $11,948, and the average cost of a funeral is $6,754 — notably below national figures. You won’t have to pay inheritance or estate taxes when you die in Oklahoma.

47. Missouri — $18,724

Average funeral expenses: $6,762
Average end-of-life medical costs: $11,962

In Missouri, the cost of a funeral averages $6,762, and the medical costs related to dying average $11,962. Neither estate taxes nor inheritance taxes are imposed.

46. New Mexico — $18,810

Average funeral expenses: $6,793
Average end-of-life medical costs: $12,017

The cost of a funeral in New Mexico averages $6,793, while medical expenses related to dying typically total $12,017. New Mexico doesn’t levy an estate tax or an inheritance tax.

45. Tennessee — $19,068

Average funeral expenses: $6,886
Average end-of-life medical costs: $12,182

Funeral costs average $6,886 in Tennessee, and medical costs related to dying are normally around $12,182. One of the most tax-friendly states for retirees, Tennessee doesn’t have an estate tax or an inheritance tax.

44. Michigan — $19,111

Average funeral expenses: $6,902
Average end-of-life medical costs: $12,209

As the seventh-cheapest state to die in, Michigan doesn’t impose an estate or inheritance tax. The average cost of a funeral in the state is low at $6,902, and medical costs associated with dying are typically around $12,209.

43. Kansas — $19,132

Average funeral expenses: $6,909
Average end-of-life medical costs: $12,223

The cost of a funeral in Kansas averages $6,909, and medical expenses related to death total approximately $12,223. No inheritance tax or estate tax is collected in the state.

42. Georgia — $19,175

Average funeral expenses: $6,925
Average end-of-life medical costs: $12,250

Falling below the national average, the standard cost for funeral expenses in Georgia is $6,925, while medical costs associated with dying are usually around $12,250. Georgia has no estate tax or inheritance tax.

41. Alabama — $19,197

Average funeral expenses: $6,933
Average end-of-life medical costs: $12,264

The average cost of a funeral in Alabama is $6,933, and medical costs associated with dying typically total $12,264. Like the other members of the 10 cheapest states to die in, Alabama doesn’t have an estate tax or an inheritance tax.

40. Wyoming — $19,197

Average funeral expenses: $6,933
Average end-of-life medical costs: $12,264

The average cost of a funeral in Wyoming is $6,933, and medical expenses associated with dying total $12,264, on average. Neither an estate tax nor an inheritance tax is collected in Wyoming.

39. Indiana — $19,347

Average funeral expenses: $6,987
Average end-of-life medical costs: $12,360

Medical costs related to dying in Indiana average $12,360, and the standard for funeral expenses is $6,987. There’s no inheritance tax or estate tax in Indiana.

38. Iowa — $19,369

Average funeral expenses: $6,995
Average end-of-life medical costs: $12,374

Iowa has no estate tax, but unlike many other states, it does have an inheritance tax of up to 15%. The average cost of a funeral is $6,995, and medical expenses related to dying hover around $12,374.

37. Nebraska — $19,519

Average funeral expenses: $7,049
Average end-of-life medical costs: $12,470

If you’re inheriting from a deceased family member in Nebraska, you’ll be taxed at a rate between 1% and 18%. However, the state doesn’t impose an estate tax. The cost of a funeral in Nebraska averages $7,049, and medical expenses associated with dying are typically around $12,470.

36. Ohio — $19,519

Average funeral expenses: $7,049
Average end-of-life medical costs: $12,470

Coming in below the national average, funeral costs in Ohio run approximately $7,049, and medical costs associated with dying total $12,470, on average. Ohio doesn’t have an estate tax or an inheritance tax.

35. Kentucky — $19,541

Average funeral expenses: $7,057
Average end-of-life medical costs: $12,484

Funeral costs in Kentucky total approximately $7,057, while medical expenses related to dying average $12,484. The state doesn’t have an estate tax, but its inheritance tax can be as much as 16%.

34. West Virginia — $19,584

Average funeral expenses: $7,072
Average end-of-life medical costs: $12,511

Dying in West Virginia will cost close to the national average, at around $12,511 in medical costs and $7,072 in funeral expenses. There’s no estate tax or inheritance tax in West Virginia.

33. Texas — $19,669

Average funeral expenses: $7,103
Average end-of-life medical costs: $12,566

The average cost of a funeral in Texas is $7,103, while medical costs associated with death are typically around $12,566. Texans don’t pay an estate tax or an inheritance tax.

32. Idaho — $19,841

Average funeral expenses: $7,165
Average end-of-life medical costs: $12,676

You won’t be charged an estate tax or an inheritance tax in Idaho, which is good news if you are the executor of a will. Plan for around $7,165 in funeral costs and approximately $12,676 in medical expenses associated with dying.

31. Louisiana — $20,185

Average funeral expenses: $7,290
Average end-of-life medical costs: $12,896

There’s no estate tax or inheritance tax in Louisiana. Medical costs related to death average $12,896, and funeral expenses run approximately $7,290.

30. Illinois — $20,314

Average funeral expenses: $7,336
Average end-of-life medical costs: $12,978

Like most states, Illinois doesn’t have an inheritance tax. However, estates worth more than $4 million are taxed at a rate of 0.8%-16%. Funeral costs average $7,336, and medical costs related to dying are typically around $12,978.

29. North Carolina — $20,400

Average funeral expenses: $7,367
Average end-of-life medical costs: $13,033

In North Carolina, there’s no estate tax or inheritance tax, so you won’t have to worry too much about what might happen to your money after you die. The average cost of a funeral is $7,367, and medical expenses associated with dying tend to total $13,033.

28. South Carolina — $20,615

Average funeral expenses: $7,445
Average end-of-life medical costs: $13,170

In South Carolina, the average cost of a funeral is $7,445, and medical costs associated with dying average $13,170. There’s no estate tax or inheritance tax.

27. Arizona — $20,852

Average funeral expenses: $7,530
Average end-of-life medical costs: $13,321

There’s no estate tax or inheritance tax in the Grand Canyon State. The average cost of a funeral is $7,530 in Arizona, and medical expenses related to death tend to add up to $13,321.

26. Wisconsin — $20,916

Average funeral expenses: $7,554
Average end-of-life medical costs: $13,363

Funeral costs in Wisconsin tend to total around $7,554, while medical expenses associated with dying average $13,363 — which are both on the cheaper side for the U.S. as a whole. No inheritance tax or estate tax is instituted, but Wisconsin is one of the most expensive states to file taxes, in general.

25. Florida — $21,045

Average funeral expenses: $7,600
Average end-of-life medical costs: $13,445

The cost of a funeral in Florida is typically around $7,600, and medical expenses associated with death average $13,445. No estate tax or inheritance tax is levied in the Sunshine State.

24. Utah — $21,153

Average funeral expenses: $7,639
Average end-of-life medical costs: $13,514

Still under the U.S. benchmark, medical costs associated with dying in Utah average $13,514, and funeral expenses are approximately $7,639. The state doesn’t impose an inheritance tax or an estate tax.

23. North Dakota — $21,239

Average funeral expenses: $7,670
Average end-of-life medical costs: $13,569

North Dakota doesn’t have an inheritance tax or an estate tax. Medical expenses associated with dying are usually around $13,569, and the average cost of a funeral is $7,670.

22. South Dakota — $21,454

Average funeral expenses: $7,748
Average end-of-life medical costs: $13,706

No estate tax or inheritance tax is imposed in South Dakota. Funeral expenses average $7,748, and medical costs related to dying are typically around $13,706 — just above the U.S. average.

21. Virginia — $21,647

Average funeral expenses: $7,818
Average end-of-life medical costs: $13,830

There’s no estate tax or inheritance tax in Virginia. Medical costs related to death hover around $13,830, and funeral expenses average $7,818.

20. Minnesota — $21,841

Average funeral expenses: $7,887
Average end-of-life medical costs: $13,953

Slightly above the national average, standard funeral costs in Minnesota come out to $7,887, and medical expenses associated with dying are approximately $13,953. The state has no inheritance tax, but if the value of your estate is above $2.4 million, you will be subject to an estate tax between 13% and 16%.

19. Pennsylvania — $21,862

Average funeral expenses: $7,895
Average end-of-life medical costs: $13,967

Pennsylvania doesn’t have an estate tax, but it does levy up to 15% in inheritance taxes. Medical expenses related to dying total approximately $13,967, and the average cost of a funeral is $7,895.

18. Colorado — $22,701

Average funeral expenses: $8,198
Average end-of-life medical costs: $14,503

There’s no need to stress about an estate tax or inheritance tax in Colorado, as neither is imposed. Funeral costs average $8,198, and medical expenses correlated with dying generally total $14,503.

17. Montana — $22,980

Average funeral expenses: $8,299
Average end-of-life medical costs: $14,681

The standard cost of a funeral in Montana is approximately $8,299, while medical costs related to dying typically average $14,681. You can keep any gold and jewels passed down to you in the Treasure State free of estate or inheritance taxes.

16. Delaware — $23,238

Average funeral expenses: $8,392
Average end-of-life medical costs: $14,846

You won’t pay an inheritance tax or estate tax in Delaware. Funeral costs average $8,392, and medical expenses related to death tend to fall around $14,846.

15. Nevada — $23,324

Average funeral expenses: $8,423
Average end-of-life medical costs: $14,901

Expect to spend about $8,423 on funeral costs in Nevada. Typical medical expenses involved with dying are $14,901, and there’s no estate tax or inheritance tax. Nevada is also one of the states with no income tax.

14. New Hampshire — $23,582

Average funeral expenses: $8,516
Average end-of-life medical costs: $15,066

Medical costs related to dying in New Hampshire average $15,066. Funeral expenses add up to $8,516, on average, but there’s no estate or inheritance tax in the Granite State.

13. Washington — $23,797

Average funeral expenses: $8,594
Average end-of-life medical costs: $15,203

In Washington, funeral expenses average $8,594, and medical expenses related to dying typically hover around $15,203. There’s no inheritance tax, but estates worth more than $2.19 million are taxed between 10% and 20%.

12. Vermont — $24,614

Average funeral expenses: $8,889
Average end-of-life medical costs: $15,725

Vermont has a 16% tax on estates worth more than $2.75 million. There’s no inheritance tax, but funeral costs average $8,889, and medical expenses related to death are typically around $15,725.

11. Maine — $25,259

Average funeral expenses: $9,122
Average end-of-life medical costs: $16,137

Maine estates valued at more than $5.6 million are taxed between 8% and 12%. There’s no inheritance tax, but the average cost of a funeral is $9,122, and $16,137 is the standard for medical expenses associated with end-of-life care.

10. Rhode Island — $25,667

Average funeral expenses: $9,269
Average end-of-life medical costs: $16,398

The average cost of a funeral in Rhode Island is $9,269, and medical expenses associated with death typically amount to $16,398. There’s no inheritance tax, but a 0.8%-16% tax is levied on estates worth more than $1.54 million.

9. New Jersey — $26,892

Average funeral expenses: $9,712
Average end-of-life medical costs: $17,181

In New Jersey, the standard funeral costs $9,712, and medical expenses correlated with dying average $17,181. There’s no estate tax, but you’ll face an inheritance tax of up to 16%.

8. Connecticut — $27,451

Average funeral expenses: $9,914
Average end-of-life medical costs: $17,538

In Connecticut, funeral costs are typically around $9,914, and medical expenses related to end-of-life care average $17,538. There’s no inheritance tax, but a 7.2%-12% tax is levied against estates valued at over $2.6 million.

7. Maryland — $27,881

Average funeral expenses: $10,069
Average end-of-life medical costs: $17,812

Funeral expenses in Maryland average $10,069, and medical bills associated with dying typically add up to $17,812. Maryland is one of the few states with both an estate tax and an inheritance tax. Inheritances are taxed up to 10%, and estates worth more than $4 million are taxed at a 16% rate.

6. Alaska — $27,924

Average funeral expenses: $10,084
Average end-of-life medical costs: $17,840

The average cost of a funeral in Alaska is $10,084, while medical expenses associated with dying hover around $17,840 — both of which are much higher than the national average. On the plus side, the state doesn’t have an inheritance tax or an estate tax.

5. Massachusetts — $28,290

Average funeral expenses: $10,216
Average end-of-life medical costs: $18,073

At around $10,216, funeral costs in Massachusetts are well above the national average. Medical expenses related to end-of-life care average $18,073. No inheritance tax is levied in Massachusetts, but estates worth more than $1 million are taxed at a 0.8%-16% rate.

4. Oregon — $28,849

Average funeral expenses: $10,418
Average end-of-life medical costs: $18,430

There’s no inheritance tax in Oregon, but if you own property in the Beaver State, plan your estate carefully — those worth more than $1 million will be taxed at a 10%-16% rate. Funeral expenses average $10,418, and medical costs related to death tend to be around $18,430.

3. New York — $29,902

Average funeral expenses: $10,799
Average end-of-life medical costs: $19,103

In New York, you won’t pay an inheritance tax, but estates worth more than $5.25 million are taxed at a 3.06%-16% rate. Funeral expenses average $10,799, and medical costs correlated with dying are $19,103.

2. California — $32,611

Average funeral expenses: $11,777
Average end-of-life medical costs: $20,834

Though it’s the second-most expensive state to die in, California doesn’t levy an estate tax or an inheritance tax. The standard cost of funeral activities is around $11,777, and medical expenses related to dying average $20,834.

1. Hawaii — $41,467

Average funeral expenses: $14,975
Average end-of-life medical costs: $26,492

Death in Hawaii is by far the priciest among all the states, as funeral costs average $14,975 and the benchmark for medical expenses correlated with end-of-life care is $26,492. The Aloha State doesn’t have an inheritance tax, but estates worth more than $11.2 million are taxed at a 10%-15.7% rate.

Where You Die Impacts the Financial Burden You Leave Behind

Fortunately for people who have to face the death of a loved one, many states don’t add an additional financial burden on the deceased’s family by levying taxes. However, this wasn’t always the case, as many states have removed estate and inheritance taxes in recent years. Others have left taxes in place but raised the exemption levels:

  • Indiana repealed its inheritance tax in 2013.
  • Tennessee repealed its estate tax in 2016.
  • New York raised its exemption level to $5.25 million and will match the federal exemption level in 2019.
  • New Jersey fully phased out its estate tax in 2018.
  • Delaware repealed its estate tax in 2018.

Overall, the cheapest places to die are Mississippi, Arkansas, Oklahoma, Missouri and New Mexico. The most expensive places to die are Hawaii, California, New York, Oregon and Massachusetts.

Complete Article ↪HERE↩!

Posted on

What happens as we die?

As with birth, dying is a process. How does it unfold? Can you prepare for it? And why should you keep talking to a dying person even if they don’t talk back?

By Sophie Aubrey

We’re born, we live, we die. Few things are so concrete. And yet, while we swap countless stories about the start of life, the end is a subject we’re less inclined to talk about.

Conversations about death – what it is, what it looks like – are scarce until we suddenly face it head on, often for the first time with the loss of a loved one.

“We hold a lot of anxiety about what death means and I think that’s just part of the human experience,” says Associate Professor Mark Boughey, director of palliative medicine at Melbourne’s St Vincent’s Hospital. “Some people just really push it away and don’t think about it until it’s immediately in front of them.”

But it doesn’t need to be this way, he says.

“The more people engage and understand death and know where it’s heading … the better prepared the person is to be able to let go to the process, and the better prepared the family is to reconcile with it, for a more peaceful death.”

Of course, not everyone ends up in palliative care or even in a hospital. For some people, death can be shockingly sudden, as in an accident or from a cardiac arrest or massive stroke. Death can follow a brief decline, as with some cancers; or a prolonged one, as with frailty; or it can come after a series of serious episodes, such as heart failure. And different illnesses, such as dementia and cancer, can also cause particular symptoms prior to death.

But there are key physical processes that are commonly experienced by many people as they die – whether from “old age”, or indeed from cancer, or even following a major physical trauma.

What is the process of dying? How can you prepare for it? And how should you be with someone who is nearing the end of their life?

What are the earliest signs a person is going to die?

The point of no return, when a person begins deteriorating towards their final breath, can start weeks or months before someone dies.

Professor Boughey says refractory symptoms – stubborn and irreversible despite medical treatment – offer the earliest signs that the dying process is beginning: breathlessness, severe appetite and weight loss, fluid retention, fatigue, drowsiness, delirium, jaundice and nausea, and an overall drop in physical function.

Simple actions, such as going from a bed to a chair, can become exhausting. A dying person often starts to withdraw from the news, some activities and other people, to talk less or have trouble with conversation, and to sleep more.

This all ties in with a drop in energy levels caused by a deterioration in the body’s brain function and metabolic processes.

Predicting exactly when a person will die is, of course, nearly impossible and depends on factors ranging from the health issues they have to whether they are choosing to accept more medical interventions.

“The journey for everyone towards dying is so variable,” Professor Boughey says.

What happens in someone’s final days?

As the body continues to wind down, various other reflexes and functions will also slow. A dying person will become progressively more fatigued, their sleep-wake patterns more random, their coughing and swallowing reflexes slower. They will start to respond less to verbal commands and gentle touch.

Reduced blood flow to the brain or chemical imbalances can also cause a dying person to become disoriented, confused or detached from reality and time. Visions or hallucinations often come into play.

“A lot of people have hallucinations or dreams where they see loved ones,” Professor Boughey says. “It’s a real signal that, even if we can’t see they’re dying, they might be.”

But Professor Boughey says the hallucinations often help a person die more peacefully so it’s best not to “correct” them. “Visions, especially of long-gone loved ones, can be comforting.”

Instead of simply sleeping more, the person’s consciousness may begin to fluctuate, making them nearly impossible to wake at times, even when there is a lot of stimulation around them.

With the slowing in blood circulation, body temperature can begin to seesaw, so a person can be cool to the touch at one point and then hot later on.

Their senses of taste and smell diminish. “People become no longer interested in eating … they physically don’t want to,” Professor Boughey says.

This means urine and bowel movements become less frequent, and urine will be much darker than usual due to lower fluid intake. Some people might start to experience incontinence as muscles deteriorate but absorbent pads and sheets help minimise discomfort.

What happens when death is just hours or minutes away?

As death nears, it’s very common for a person’s breathing to change, sometimes slowing, other times speeding up or becoming noisy and shallow. The changes are triggered by reduction in blood flow, and they’re not painful.

Some people will experience a gurgle-like “death rattle”. “It’s really some secretions sitting in the back of the throat, and the body can no longer shift them,” Professor Boughey says.

An irregular breathing pattern known as Cheyne-Stokes is also often seen in people approaching death: taking one or several breaths followed by a long pause with no breathing at all, then another breath.

“It doesn’t happen to everybody, but it happens in the last hours of life and indicates dying is really front and centre. It usually happens when someone is profoundly unconscious,” Professor Boughey says.

Restlessness affects nearly half of all people who are dying. “The confusion [experienced earlier] can cause restlessness right at the end of life,” Professor Boughey says. “It’s just the natural physiology, the brain is trying to keep functioning.”

Circulation changes also mean a person’s heartbeat becomes fainter while their skin can become mottled or pale grey-blue, particularly on the knees, feet and hands.

Professor Boughey says more perspiration or clamminess may be present, and a person’s eyes can begin to tear or appear glazed over.

Gradually, the person drifts in and out or slips into complete unconsciousness.

How long does dying take? Is it painful?

UNSW Professor of Intensive Care Ken Hillman says when he is treating someone who is going to die, one of the first questions he is inevitably asked is how long the person has to live.

“That is such a difficult question to answer with accuracy. I always put a rider at the end saying it’s unpredictable,” he says.

“Even when we stop treatment, the body can draw on reserves we didn’t know it had. They might live another day, or two days, or two weeks. All we know is, in long-term speaking, they certainly are going to die very soon.”

But he stresses that most expected deaths are not painful. “You gradually become confused, you lose your level of consciousness, and you fade away.”

Should there be any pain, it is relieved with medications such as morphine, which do not interfere with natural dying processes.

“If there is any sign of pain or discomfort, we would always reassure relatives and carers that they will die with dignity, that we don’t stop caring, that we know how to treat it and we continue treatment.”

Professor Boughey agrees, saying the pain instead tends to sit with the loved ones.

“For a dying person there can be a real sense of readiness, like they’re in this safe cocoon, in the last day or two of life.”

Professor Boughey believes there is an element of “letting go” to death.

“We see situations where people seem to hang on for certain things to occur, or to see somebody significant, which then allows them to let go,” he says.

“I’ve seen someone talk to a sibling overseas and then they put the phone down and die.”

How can you ‘prepare’ for death?

Firstly, there is your frame of mind. In thinking about death, it helps to compare it to birth, Professor Boughey says.

“The time of dying is like birth, it can happen over a day or two, but it’s actually the time leading up to it that is the most critical part of the equation,” he says.

With birth, what happens in the nine months leading to the day a baby is born – from the doctor’s appointments to the birth classes – can make a huge difference. And Professor Boughey says it’s “absolutely similar” when someone is facing the end of life.

To Professor Hillman, better understanding the dying process can help us stop treating death as a medical problem to be fixed, and instead as an inevitability that should be as comfortable and peaceful as possible.

Then there are some practicalities to discuss. Seventy per cent of Australians would prefer to die at home but, according to a 2018 Productivity Commission report, less than 10 per cent do. Instead, about half die in hospitals, ending up there because of an illness triggered by disease or age-related frailty (a small percentage die in accident and emergency departments). Another third die in residential aged care, according to data from the Australian Institute of Health and Welfare.

Professor Hillman believes death is over-medicalised, particularly in old age, and he urges families to acknowledge when a loved one is dying and to discuss their wishes: where they want to die, whether they want medical interventions, what they don’t want to happen.

“[Discussing this] can empower people to make their own decisions about how they die,” says Professor Hillman.

Palliative Care Nurses Australia president Jane Phillips says someone’s end-of-life preferences should be understood early but also revisited throughout the dying process as things can change. With the right support systems in place, dying at home can be an option.

“People are not being asked enough where they want to be cared for and where they want to die,” Professor Phillips says. “One of the most important things for families and patients is to have conversations about what their care preferences are.”

How can you help a loved one in their final hours?

Studies show that hearing is the last sense to fade, so people are urged to keep talking calmly and reassuringly to a dying person as it can bring great comfort even if they do not appear to be responding.

“Many people will be unconscious, not able to be roused – but be mindful they can still hear,” Professor Phillips says.

“As a nurse caring for the person, I let them know when I’m there, when I’m about to touch them, I keep talking to them. And I would advise the same to the family as well.”

On his ICU ward, Professor Hillman encourages relatives to “not be afraid of the person on all these machines”.

“Sit next to them, hold their hands, stroke their forehead, talk to them about their garden and pets and assume they are listening,” he says.

Remember that while the physical or mental changes can be distressing to observe, they’re not generally troubling for the person dying. Once families accept this, they can focus on being with their dying loved one.

Professor Boughey says people should think about how the person would habitually like them to act.

“What would you normally do when you’re caring for your loved one? If you like to hold and touch and communicate, do what you would normally do,” he says.

Other things that can comfort a dying person are playing their favourite music, sharing memories, moistening their mouth if it becomes dry, covering them with light blankets if they get cold or damp cloths if they feel hot, keeping the room air fresh, repositioning pillows if they get uncomfortable and gently massaging them. These gestures are simple but their significance should not be underestimated.

What is the moment of death?

In Australia, the moment of death is defined as when either blood circulation or brain function irreversibly cease in a person. Both will eventually happen when someone dies, it’s just a matter of what happens first.

Brain death is less common, and occurs after the brain has been so badly damaged that it swells, cutting off blood flow, and permanently stops, for example following a head injury or a stroke.

The more widespread type of death is circulatory death, where the heart comes to a standstill.

After circulation ceases, the brain then becomes deprived of oxygenated blood and stops functioning.

The precise time it takes for this to happen depends on an individual’s prior condition, says intensive care specialist Dr Matthew Anstey, a clinical senior lecturer at University of Western Australia.

“Let’s say you start slowly getting worse and worse, where your blood pressure is gradually falling before it stops, in that situation your brain is vulnerable already [from reduced blood flow], so it won’t take much to stop the brain,” Dr Anstey says.

“But if it’s a sudden cardiac arrest, the brain could go on a bit longer. It can take a minute or two minutes for brain cells to die when they have no blood flow.”

This means, on some level, the brain remains momentarily active after a circulatory death. And while research in this space is ongoing, Dr Anstey does not believe people would be conscious at this point.

“There is a difference between consciousness and some degree of cellular function,” he says. “I think consciousness is a very complicated higher-order function.”

Cells in other organs – such as the liver and kidneys – are comparatively more resilient and can survive longer without oxygen, Dr Anstey says. This is essential for organ donation, as the organs can remain viable hours after death.

In a palliative care setting, Professor Boughey says the brain usually becomes inactive around the same time as the heart.

But he says that, ultimately, it is the brain’s gradual switching off of various processes – including breathing and circulation – that leads to most deaths.

“Your whole metabolic system is run out of the brain… [It is] directing everything.”

He says it’s why sometimes, just before death, a person can snap into a moment of clarity where they say something to their family. “It can be very profound … it’s like the brain trying one more time.”

What does a dead person look like?

“There is a perceptible change between the living and dying,” Professor Boughey says.

“Often people are watching the breathing and don’t see it. But there is this change where the body no longer is in the presence of the living. It’s still, its colour changes. Things just stop. And it’s usually very, very gentle. It’s not dramatic. I reassure families of that beforehand.”

A typical sign that death has just happened, apart from an absence of breathing and heartbeat, is fixed pupils, which indicate no brain activity. A person’s eyelids may also be half-open, their skin may be pale and waxy-looking, and their mouth may fall open as the jaw relaxes.

Professor Boughey says that only very occasionally will there be an unpleasant occurrence, such as a person vomiting or releasing their bowels but, in most cases, death is peaceful.

And while most loved ones want to be present when death occurs, Professor Boughey says it’s important not to feel guilty if you’re not because it can sometimes happen very suddenly. What’s more important is being present during the lead-up.

What happens next?

Once a person dies, a medical professional must verify the death and sign a certificate confirming it.

“It’s absolutely critical for the family to see … because it signals very clearly the person has died,” says Professor Boughey. “The family may not have started grieving until that point.”

In some cases, organ and tissue donation occurs, but only if the person is eligible and wished to do so. The complexity of the process means it usually only happens out of an intensive care ward.

Professor Boughey stresses that an expected death is not an emergency – police and paramedics don’t need to be called.

After the doctor’s certificate is issued, a funeral company takes the dead person into their care and collects the information needed to register the death. They can also help with newspaper notices or flowers.

But all of this does not need to happen right away, Professor Boughey says. Do what feels right. The moments after death can be tranquil, and you may just want to sit with the person. Or you might want to call others to come, or fulfil cultural wishes.

“There is no reason to take the body away suddenly,” Professor Boughey says.

You might feel despair, you might feel numb, you might feel relief. There is no right or wrong way to feel. As loved ones move through the grieving process, they are reminded support is available – be it from friends, family or health professionals.

Complete Article ↪HERE↩!

Posted on

The Role of Nurses When Patients Decide to End Their Lives

Some hospitals and hospices have policies that forbid nurses to be part of the process or even to discuss end-of-life options.

By Emilie Le Beau Lucchesi

When Ben Wald, 75, was dying of cancer in 2012, he wanted to use Oregon’s Death with Dignity Act to receive a prescription for a lethal medication that would end his life. His hospice nurse, Linda, was part of the discussion and provided both information and support, said his wife, Pam Wald, of Kings Valley, Ore.

His colon cancer had spread to his lungs, and his weight dropped from 180 to 118 pounds. He struggled to speak or eat.

When he was ready to end his life, the couple wanted Linda with them, but the hospice organization she worked for did not allow it, Mrs. Wald said. The organization allowed other hospice workers, such as social workers and massage therapists, to be present, but not the doctors or nurses it employed.

Without a nurse present, Mrs. Wald was going to be alone with her husband when he died. She wanted someone knowledgeable to support her through the process. She reached out to Compassion & Choices, a national advocacy group for aid in dying. The group paired her with two volunteers, one of whom was a retired intensive care nurse.

“You watch your husband die and you hear that change in breathing,” Mrs. Wald said. “Jane, the I.C.U. nurse, she said, ‘The breathing changes. You’re doing fine, Pam. Keep holding his hands.’”

As access to aid in dying expands this fall, one in five Americans will live in a state that permits legal aid in dying.

But many may still run into the problem the Walds had, because some hospitals and hospices see medical aid in dying as conflicting with their traditional mission of protecting life and avoiding harm to patients. Those that are faith-based typically follow church policy against medical aid in dying.

Some have policies that forbid nurses even to discuss end of life options. Others hold a “neutral” stance on aid in dying, but bar doctors or nurses from being in the room while a patient self-ingests the medication and begins the dying process.

In June, the American Nurses Association passed a position statement providing guidance on the nurse’s role in medical aid in dying, said Liz Stokes, the director of the American Nurses Association Center for Ethics and Human Rights.

“We want to be clear: Nurses absolutely do not have to be present or provide that comfort if they feel they have a moral or religious objection. Our code of ethics states they have the right to object,” Ms. Stokes said.

But for those who wish to support their patients, the new statement defines key words such as “participation” and “presence.” These definitions are meant to encourage organizations to be clearer in terms of a nurse’s ability to answer questions during the decision-making process or offer support in the final moments.

Currently, Ms. Stokes said many company policies are vague and difficult to interpret. Even terms like “to witness” or “to be present” may be open to interpretation. Ms. Stokes said the association has received inquiries from nurses wondering if covering their eyes qualified as not witnessing.

A 2014 study in the Journal of Pain and Symptom Management analyzed 30 policies from members of the hospice and palliative care organization in Washington, where aid in dying has been available since 2009.

Of the policies analyzed, 78 percent prevented nurses or other staff members from being present during or after the prescription was taken. The authors described the policies as “relatively silent” about the rationale for their decisions, but some referred to medical aid in dying as being “outside the scope of hospice practice.” Others did not want to be seen as “taking sides.”

The hospices that allowed staff members to be present made note of the core hospice value of not abandoning patients.

The study found that although the policies tend to be vague, there is a clear distinction between the role of the physician and that of the hospice. Physicians who write the prescription might not be employed by the hospice and therefore not subject to the organization’s particular policies. Policies note that physicians have a responsibility to respond to any complications that might occur after the prescription is ingested.

Each jurisdiction that permits medical aid in dying publishes annual reports on who took the medication, and why, where and whether medical practitioners were present.

In California’s report for 2018, only 54.3 percent of aid in dying patients were reported to have a medical care provider present at the time of ingestion. In Oregon’s 2017 report, only 33 percent of patients did. Many of these medical providers did not remain at the bedside, and 70 percent of patients in Oregon did not have a provider present at the time of death.

Keith Seckel, a registered nurse in Corvallis, Ore., believes it can be helpful to have a medical practitioner present. He has taken care of about a dozen patients who utilized their state’s aid in dying law. He was with them and their families as they took the lethal medicine and died. Mr. Seckel said a nurse is helpful in managing a patient’s discomfort or pain before taking the medication.

Many patients at the end of life experience anxiety, constipation, nausea, pain or shortness of breath. A patient who is short of breath, for example, might get anxious about swallowing the medicine for fear of choking. A nurse can provide reassurance, which Mr. Seckel said takes the pressure off the patient and family members to “get it right.”

He said that having a nurse in the room can also ease the stress for family members, particularly when their loved one makes unfamiliar sounds or unexpected movements.

Mr. Seckel said the timeline varies for each patient. The patient usually takes an anti-nausea medication anywhere from 15 to 60 minutes in advance. In all jurisdictions, the patient must administer the medicines themselves. Nurses and physicians are prohibited from assisting.

Mr. Seckel said some patients then take an anti-anxiety medication before the fatal dose. Within minutes, patients typically report feeling drowsy.

“I might offer to the patient, ‘If you can feel it hitting you, if there is something you want to say, say it now,’” Mr. Seckel said.

The patient then slips into unconsciousness. Mr. Seckel said he watches for signs of discomfort or pain. Some family members ask him for updates as their loved one’s breathing begins to slow or color drains from their skin. Others, Mr. Seckel said, are too connected to the moment to ask questions but want to review the experience with him later.

Because the laws clearly state that a patient must be able to take the medicine without assistance, Mr. Seckel said patients often have questions about their disease progression and how much time they likely have until they can no longer take the lethal medicine on their own. Often, the role of the nurse is to give patients information so they can determine a timeline for themselves.

He said there have also been times when he has been called to the bedside after the patient passed. He said it’s not uncommon for family members to want confirmation that their loved one is truly gone. “I’ve had more than one person say, ‘I’m glad you were there, we wouldn’t have known what to do,’” Mr. Seckel said.

Complete Article ↪HERE↩!

Posted on

Is Dying at Home Overrated?

A palliative care physician struggles with the complex realities of dying at home, and the unintended consequences of making it a societal priority.

By Richard Leiter, M.D.

“If time were short, where would you want to be?”

As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. The specific language I use depends on what they know, what they want to know and how they process information, but the basic premise is the same. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home.

But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.

It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to “fix” the underlying problem. We worry that people will go through expensive and potentially painful tests and interventions that have little chance of changing the ultimate outcome. And the opportunity costs are high; time waiting for a scan or procedure could be spent getting financial affairs in order or saying goodbye.

While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short. Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field.

The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members.

Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of IV medications in the hospital. For others, dying at home may not be their top priority. Parents may want to protect their young children’s physical space from death. Similarly, one patient’s wife told me through tears that their adult son had died suddenly in their home a few years earlier; she could not bear the thought of watching her husband die in the same place.

We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. We wonder what the critical gap was that led the family to call 911 or come to the emergency department. Was the patient’s pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong.

I wonder, though, if we’ve adopted the wrong approach. As a doctor who regularly asks my patients where they “want” to die, I often worry about what this will look like if they choose home. I am concerned about the unacknowledged caregiving burden for families and friends. In addition, many people with advanced disease experience escalating symptoms, like pain or shortness of breath, that even the best hospices have difficulty managing in the home. In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment. The patient in front of me always takes precedence, but my cognitive dissonance is difficult to escape.

To be sure, dying in the hospital has its own trade-offs. Though we can make more, and faster, medication adjustments, severe symptoms can be difficult to treat regardless of the setting. And as much as we try, it’s nearly impossible to alter the health care system’s usual rhythms. Overflowing hospitals often lack the flexibility to give dying patients the privacy of a single room. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. Family and friends may live hundreds of miles away, preventing them from being with their loved ones at critical moments. While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. Most patients are only eligible if they are in the last few days of life or have severe, uncontrolled symptoms that would otherwise require hospitalization.

This dilemma entered my personal life earlier this year. The caregiver for my 96-year old grandmother found her slumped over and unresponsive in her wheelchair in her apartment, where she lived alone, but with the support of aides around the clock. She did not regain consciousness, and the paramedics arrived to take her to the hospital. When my uncle called to tell me what was going on, I was unsure of how to respond. My grandmother’s health and cognition had been declining over the past few months, but her quality of life was still good. In that moment, though, my clinical intuition was that she was dying. As a palliative care physician, wasn’t it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed? With uncertainty and emotion clouding my judgment, I froze.

The paramedic took the phone and gently explained that he wanted to ensure my grandmother had all the care she needed, whatever the outcome. Taking her to the hospital was the right decision. The doctor in the emergency department empathically told us he thought my grandmother was dying and recommended we focus on ensuring that the short time she had left was as comfortable as possible. The nurses quietly checked on her throughout the night, looking for any signs of distress. My grandmother died the next morning — in the hospital and at peace.

The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that my grandmother did, we need to focus not only on where, but also on how they die. When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our society’s sickest and most vulnerable. Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.

Complete Article ↪HERE↩!

Posted on

“Guardianship” Often Fails Poor Seniors.

Is There a Different Way?

Lack of regulation and potential for abuse make many elder care advocates wary of the guardianship model.

By

When Patricia Cassidy was at her lowest point, she had just been evicted, was overwhelmed with mounting medical bills, and was suffering from a traumatic brain injury that left her emotionally unable to cope with everyday tasks. Then her despair turned to fear as she found herself before a local judge, who mandated that she would have to cede control over her financial and medical affairs to a guardian — an organization that the court would task with managing many components of her life on her behalf.

“I went to the hearing, and it was very, very scary for me,” she recalled in a recent interview. At the time, her therapist and rheumatologist had petitioned the court to place her in a special public guardianship program for people without other means of support from family or friends. But Cassidy, a 59-year-old domestic abuse survivor facing several chronic ailments, feared losing her independence. “I was afraid of guardians,” she said. “I felt that they were going to come in and take over my life and take over everything I had and get rid of it all.”

Five years later, Cassidy said that what she most feared about guardianship — losing control — hasn’t happened. Instead, she’s stayed independent, living in a Brooklyn apartment her case worker helped secure. She now sees her guardianship, administered by the nonprofit advocacy group Vera Institute of Justice, as “just a part of my life.” But her program is part of a small, unconventional support network for extremely vulnerable seniors that aims to safeguard their lives without taking them over. For hundreds of thousands of other seniors, guardianship is an ethical gray zone, operating at the heart of a question that increasingly haunts an aging nation: When am I no longer able to care for myself?

Aging Gaps

Guardianship is one of the most ethically fraught aspects of the elder care system, hinging on the most sensitive questions about personal liberty, medical responsibility and kinship. And it all starts, for better or worse, with a judge’s decree. A court appoints a guardian when a senior is deemed unable to live independently, usually after a hearing process that reviews an individual’s medical needs or physical, intellectual, mental or psychological disabilities, and determines that guardianship is appropriate. Similar to adoption, the guardian is in most cases a relative or friend who petitions for them. But people with fewer resources might end up in the care of a public or private agency, which is tasked with managing issues like medical treatment, financial planning and end-of-life care.

Overall, about 1.5 million people nationwide are in some form of guardianship, more than three-quarters of them involving a relative. Seniors without friends or relatives who are willing to help manage their affairs may enter the care of a private guardian (who is generally arranged by family or friends and compensated directly), if they have the financial resources to do so. Elderly people who don’t have enough funds to finance their own guardians can enter a separate system known as public or community guardianship, provided by a nonprofit or government agency. But as a whole, court-appointed guardianships lack central regulation or monitoring. Advocates fear that as the Baby Boom generation ages and guardianship becomes more widespread, so will the potential for abuse or neglect.

The Vera Institute’s The Guardianship Project (TGP) is trying to get courts and communities to reimagine guardianship, both through research and advocacy and through running its own guardianship model, which now serves about 180 people across New York, including Cassidy. On a national level, TGP’s research on guardianship programs in several states suggests the system is letting many seniors fall through the cracks: Surveys of judges and other court personnel, along with professional guardians, indicate that many courts are overstretched; there is little monitoring of cases, and judges often lack expertise for handling complex cases of seniors with serious health and economic issues. Meanwhile, court-appointed guardians are in many cases attorneys, who might have no expertise in caregiving, and respondents reported a lack of guardians available with skills like social work and nursing.

“Basically, what the whole story is showing is that there’s a population of elderly, disabled and/or poor people that are largely invisible and largely ignored,” said TGP Director Kimberly George.

Meanwhile, public wariness of guardianship is growing: Media reports and government audits have revealed many cases plagued by dysfunctional bureaucracy and a pattern of elder abuse. In professional private guardianships, which often take in seniors who have some assets to pay for services, scandals have erupted in cases of neglect, exploitation or abuse of elderly people. But the poorest seniors are even more vulnerable, since their fate relies completely on the courts and public welfare systems. Poor, socially isolated seniors with complex care needs often find themselves assigned to a public or community guardian that is financed by public funds, but without adequate resources for care and legal services. According to Peter Strauss, an elder law attorney and professor at New York Law School, when funding is arbitrary and inconsistent, guardians, public or private are frustrated by “underfunding, short staff, and then they get overwhelmed with the number of cases that they can’t handle.”

“There’s a gaping hole in the system for folks who don’t have money, but who need help and don’t have anybody [who] can step in to pay their bills, make health care decisions and the like,” said Bernard Krooks, an elder law attorney who handles guardianship cases in New York. Although public guardianship programs could play a critical role for the most marginalized seniors, Krooks told Truthout, “The reality is, there has not been a funding mechanism in New York State to make this happen.”

Keeping Elders at Home

TGP’s model seeks to serve as a different kind of last resort, aiming to provide intensive services for seniors in economic hardship, with no family or friends available to serve as guardians. Funded by New York’s Office of Court Administration and other public and philanthropic funds, TGP serves clients across a range of settings, including residential care facilities, but aims to keep clients in their communities. Each client with a “wraparound team” that includes lawyers and other support staff, with specialists in managing public benefits, finances and housing. About half of the clients live at or below the federal poverty line, and half are people of color. About 60 percent of clients are living in their communities, while others live in residential institutions like nursing homes.

TGP’s multidisciplinary program intends to knit together different strands of the social infrastructure to help people avoid nursing homes and jails. If a client with mental health problems suffers a breakdown and gets arrested, TGP can provide legal representation to secure their release from jail and help connect them to a long-term treatment program that fits their needs. TGP can also support undocumented seniors by helping them obtain medical care and other services while avoiding immigration authorities and federal law that curtails non-citizens’ access to aid.

Until recently, Cassidy hardly fit the stereotype of an “incapacitated” elder. Earlier in her life, she had worked in public relation and museum curation, but over the years, her health deteriorated due to various chronic ailments and domestic abuse. Then in her mid-fifties, she was living on her own — just not very well. Her brain injury often triggered emotional outbursts; basic tasks like a visit to the bank could spiral into an angry breakdown. “I was very overwhelmed, and then therefore not able to even operate on the simplest level,” she said. Cassidy’s vulnerability was aggravated by estrangement from family members. “It was like I became an orphan at 50,” she said.

Her therapist and rheumatologist encouraged her to enter into the guardianship as a way of getting her life under control. A TGP case worker and other staff have helped her sort out her finances and secure a new apartment with a special housing subsidy based on her medical condition. While Cassidy is capable of making her own treatment decisions, her guardian also acts as an interlocutor. A conversation with a doctor can leave her “mentally fatigued,” she adds, but TGP staff “are there with me, and they’re talking to the doctor … then afterwards if they need to, [they] explain it to me five times — the doctor is not going to explain anything to you five times — [so that] I’m sure that it’s a good decision that’s being made.”

TGP works with individuals in residential institutions, but also helps them move back into their communities whenever possible. As the report explains, many clients become “stuck” in the medical system, “languishing needlessly in a hospital or nursing home,” unable to be discharged “because no one will take on the challenges of transitioning him or her back to their homes or to a less-restrictive setting with proper oversight.” Many guardians, George said, particularly those ill-prepared to deal with complex, high-needs clients, might be tempted to place a senior in a nursing home as an “easier” solution — eliminating the need for the guardian to worry about housing, food or managing the client’s bills.

When TGP steps in, the team prepares for a client’s return home by taking care of tasks like settling rent arrears with the landlord, or planning end-of-life care — services that the client would never be able to arrange while bedridden in a crowded rehab center. If a client’s condition deteriorates to the point that some form of institutionalization, such as placement in a nursing home, appears necessary, TGP would work to place them in the least restrictive setting, according to the study, perhaps seeking out a local facility “with staff who speak a client’s primary language and access to religious services and culturally familiar foods.”

Despite its personalized approach, a recent cost-analysis found that TGP’s budget saved its roughly 160 to 180 clients collectively about $3 million in annual Medicaid costs, primarily by avoiding placements in nursing homes.

The Vera Institute’s study suggests other counties and states can use a similar holistic approach to public guardianship. On the policy level, TGP’s study calls for an expansion of public guardianship nationwide — with additional funding, comprehensive monitoring of guardians and service providers, and enhanced regulatory standards, including a commitment to placing people in the least restrictive setting, and a staff-client ratio of 1 to 20 to ensure adequate resources and oversight. Overall, a more human-centered public guardianship program could enable the most vulnerable seniors to live more independently and stay close to their communities.

Safeguarding Elder Rights

Still TGP, with its limited capacity, is not itself a solution for the guardianship crisis. Some disability rights advocates criticize the concept of guardianship in general, viewing it as incompatible with the principle of independent living. They prefer alternative legal arrangements like “supported decision-making,” in which social service providers provide guidance for people on medical and financial decisions while still leaving them legally in charge of their affairs.

Meanwhile, progressive elder law advocates are also gravitating toward alternatives to guardianship that support independence whenever feasible. Alison Herschel, director of Michigan Elder Justice Initiative, says that while guardianship is necessary for some individuals, “we believe there are far too many guardianships and far too many cases that should have been resolved by utilizing less restrictive alternatives.”

The Vera Institute’s study urges court administrators to implement better training so courts can screen cases so people can opt for less restrictive options like supported decision-making. Instead of appointing a guardian for a senior with severe dementia, for example, a judge could arrange for a sibling to gain power of attorney to aid with medical or legal decisions, and provide a home health aide. Even when guardianship is strictly a last resort, the court process can be a framework for meeting a senior’s needs for both care and personal dignity, and providing support without threatening self-determination.

For Cassidy, the TGP guardianship model is not just about getting the right services, but regaining a firm sense of both her abilities and limits. Her guardian hasn’t taken over her life, as she had once feared; instead, it’s a stabilizing presence.

If she ever needs her case worker, she knows who to call. “I carry their card with me all the time.”

Complete Article ↪HERE↩!