Advance Directives – Page 23 – The Amateur's Guide To Death & Dying

November 18, 2016November 17, 2016

Q: How can I learn more about advance directives/advance care planning?

Cecelia Clayton, MPH, is the executive director at Karen Ann Quinlan Hospice.

Q: How can I learn more about advance directives/advance care planning?

A: During National Hospice Month it’s important to know your options. All adults can benefit from thinking about what their health care choices would be if they are unable to speak for themselves. These decisions can be written down in an advance directive so that others know what they are. Advance directives come in two main forms:

Proxy Directive (Durable Power of Attorney for Healthcare)
A proxy directive is a document you use to appoint a person to make healthcare decisions for you in the event you become unable to make them yourself. This document goes into effect whether your inability to make healthcare decisions is temporary because of an accident or permanent because of a disease. The person that you appoint is known as your “healthcare representative” and they are responsible for making the same decisions you would have made under the circumstances. If they are unable to determine what you would want in a specific situation they are to base their decision on what they think is in your best interest.

Instruction Directive (Living Will)
An instruction directive is a document you use to tell your physician and family about the kinds of situations you would want or not want to have life-sustaining treatment in the event you are unable to make your own healthcare decisions.

You can also include a description of your beliefs, values, and general care and treatment preferences.

This will guide your physician and family when they have to make healthcare decisions for you in situations not specifically covered by your advance directive.

Advance Directive: Your Right to Make Health Care Decisions
You have the right to:

Ask questions about your care.
Completely understand your medical condition.
Accept or refuse any treatments.
Make future decisions by completing an advance directive.
If you have a life-limiting illness — you have the right to choose the hospice of your choice.

Karen Ann Quinlan Hospice has ready-made packets with current Living Will information available at no charge. The packets can be picked up at the desk at the hospice office at 99 Sparta Ave, in Newton, or call the hospice at 973-383-0115, or at 800-882-1117 to have one mailed to you.

Free seminar

More information will be available at the “Ask An Elder Law Attorney” seminar that will be held from 10:30 to 11:30 a.m., Dec. 8 at the Pike County Public Library in Milford, Pa.

The event is free to the public and light refreshments will be served.

Attendees will be able to ask questions about elder care, estate planning, living trust, last will and testament, advance directives and more. For more information, visit www.KarenAnnQuinlanHospice.org/Seminar.

Here is a checklist to consider to plan ahead or if you need help now.

Get the information you need to make informed choices about end-of-life care.
Get to know end-of-life care services that are available, such as hospice and palliative care providers.
For information, visit the National Hospice and Palliative Care Organization’s website: www.nhpco.org
Discuss your thoughts, concerns and choices with your loved ones.
Talk to your doctor about different treatments.
Establish advance directives (a living will and medical power of attorney) for your state.
Talk to your healthcare agent, family and doctor about your choices.
Discuss your choices often, especially when your medical condition changes.
Keep your completed advance directives in an accessible place.
Give photocopies of the signed originals to your healthcare agent, alternate agents, doctor, family, friends, clergy and anyone else who might be involved in your healthcare.
Assess your financial situation, create a financial inventory and determine what end-of-life goals you want to accomplish that involve money.
Learn about the cost of end-of-life care, how medical bills and expenses will be paid for if you are not able to.
Make financial decisions such as how you want to give your money and possessions to others upon your death.
Prepare for the time when you cannot handle money matters; appoint a durable power of attorney.
Plan your funeral/memorial service.

The living will is a direct result of the Karen Ann Quinlan landmark case won by Joseph and Julia Quinlan in 1976 on behalf of their daughter, Karen Ann.

Complete Article HERE!

October 19, 2016October 18, 2016

How would you like to die? It’s time to talk about it…

‘You get to die only once, and you have one chance to get it right’

By Alan Kirk

Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.

[H]ow would you like to die? Is this a question you ever ask yourself? More importantly, is it a question you ever answer? And, most importantly, is it an answer you share with your family?

For many it seems, the answer is no. Yet, when asked, it is something many of us would like to do. When the Irish Hospice Foundation (IHF) carried out research, they found 60 per cent of people thought there wasn’t enough discussion about death, yet 66 per cent have never discussed what they want around their end-of-life care with family.

“It’s a clear case of what people want versus what people do,” says Sharon Foley, chief executive of the IHF. “You get to die only once, and you have one chance to get it right. It’s so important to think about what you want for yourself at the end of life, now, while you still have capacity, to ensure the proper care and support for you, and less trauma for your family and loved ones.”

>When the doctor asked to talk to my dad and I, and we followed him into a side room, I knew it wasn’t good. All previous conversations had been in the ward corridor. This room had comfy chairs and a box of tissues. The room itself was the opening conversation about my mum’s death. He sat us down and explained that my mum’s stroke had been catastrophic causing significant brain damage, paralysis, double incontinence and that her chances of survival were not good. I had seen enough of my mum to know also that, if she did survive, her chances of living were not very good either.<

The doctor asked us what we wanted to do, if my mum needed to be resuscitated. Neither of us hesitated or even looked at each other to confer. We both said immediately, “Do not resuscitate.” We were lucky. We knew what my mum would have wanted. She had told us often enough. But I often wonder what would have happened if we had looked at each other first, and one of us defiantly had said yes.

But this is what often happens, as the decision over a parent or spouse’s death is left up to family members who are already in a deep place of distress. We know medical science is improving all the time and people are living longer, an obviously positive development. But it is also a challenge to respond to the care needs of an ageing population. While the medical profession has rightly focused on quantity of life, has society focused enough on the issue of quality of life? And, in particular, end of life?

According to Foley, no. “I liken it to the discussions in the 1980s around breast cancer. Women didn’t discuss it with friends. There were whispers about the ‘Big C’ and, as a result, women didn’t get screened, or get any support. Now screening and support are a part of life. We need the same sea change around our wishes regarding end of life.”

Critical conversation

For obvious reasons, thinking about our, or our parent’s death, is an upsetting notion, but, as Justin Moran of Age Action explains, it is critical to have that conversation while you still can. “We all think and prepare for what we leave behind in terms of our house and our legacy, but what about your own death? Thinking clearly about how you might want to be treated – or not – and ensuring decisions aren’t left to those you are leaving behind is about empowering people to make decisions for themselves while they can.”

The Irish Hospice Foundation encourages people to give guidance to family through a a campaign called Think Ahead and Have Your Say campaign, and this year legislation has come out introducing the opportunity for us all to leave a “living will”.

The Advanced Healthcare Decisions Bill gives people the chance to communicate their final healthcare requests when they might no longer be in a position to do so, and to provide healthcare professionals with important information about the patient’s treatment choices. You can also appoint a designated healthcare representative – a close friend or family member – to make healthcare decisions on your behalf if you no longer have the capacity to make those decisions.

A good death

“There is a lot of debate around what a ‘good death’ is,” says Foley. “This is about making death – something already heartbreaking and distressing for all – as respectful to the wishes of the patient as possible.”

Justin Moran acknowledges these are hard conversations to have with our parents or children. “It’s about ensuring that you retain as much control as you can over that part of your life.You don’t want to leave that responsibility to the people you love, who are already going through a tough time.”<

But is it enough? Back in that hospital room, we agreed to a DNR if my mum stopped breathing. But it was another five and a half years before she took her last breath. In the final months, in consultation with doctors, we took a further step to withdraw active life-prolonging treatment after she suffered a series of hospital-admitted infections which caused distress to everyone, especially her. We knew my mum’s wishes. But even at the end all we could do was withdraw treatment and wait and watch for the several weeks that nature took its course. She was never in pain. But she was distressed. She watched us, watching her die.

In many ways my mum had a “good death”. She died in my arms at home, with my dad and brother holding her hands. We had spent the previous two weeks constantly by her side, talking and touching, loving and laughing, holding her tight and letting her go. But, as her daughter, it was a terrible death.

Once we knew she was dying, once doctors confirmed she had passed the point of any recovery, there was nothing we could do but let her linger and languish as her body slowly shut down. She could easily have died when we had nipped to the loo, or gone to put the kettle on. The stress of that fear haunts me still. The conversation about dying has only just begun. But, for now, if we love the life we live, if we love the family we leave behind, if we want to be in control of our living, then as a society and individually, we need to talk more about dying.

Complete Article HERE!

October 1, 2016September 29, 2016

Push To Take End-Of-Life Forms Digital Reveals Complicated Path Ahead

By Karen Shakerdge

molst — The top portion of a paper MOLST form. It says, “The patient keeps the original MOLST form during travel to different care settings. The Physician keeps a copy,” on all four pages.

Dennis Rodgers flips over a bright pink piece of paper and rattles off his choices: “Attempt resuscitation or do not attempt resuscitation… to do limited intervention or to take no medical intervention… and another section, whether to intubate or not to intubate.”

Rodgers, 82, says he and his physician filled out the form together when he moved to a community outside of Rochester, N.Y.

For years physicians in New York state have asked seriously sick patients to fill out this paper document, capturing their wishes in case of emergency.

Most Americans don’t plan ahead for end of life. But for those who do, like Rodgers, there’s a risk that the right people won’t even see the document when it really matters. After all, a piece of paper is easily lost or left behind in an emergency.

Advocates and lawmakers in New York are now pushing to shift the paper system to a mandatory electronic database for better access. But the requirement would call for a technology fix that’s not coming easily.

Most states have some version of these documents, typically called a Physician Order for Life Sustaining Treatment, or POLST. In New York state, the form is called MOLST. It stands for Medical Order for Life Sustaining Treatment.

Unlike advance directives, the MOLST form is a detailed legal document, prepared with a physician. MOLST forms are not meant for the general population. They’re meant for patients who physicians suspect may die within a year.

Without a POLST-like form, physicians or paramedics are trained to keep someone alive including aggressive life-sustaining treatment, if need be.

Nearly everyone benefits if patients make their medical wishes clear. Patients make sure they’re not subjected to measures they don’t want. Family members don’t have to wonder. And insurance companies can save money.

End of life care is one of the biggest medical expenses in our health system. About a quarter of traditional Medicare costs are for expenses patients incur in their last year of life, according to a report from the Kaiser Family Foundation.

“The majority of states right now have a POLST process. The question is how effective is that process if I can’t get access to that as a health care provider?” asks Rick Bassett, chair of the national POLST technology committee.

A handful of states have established electronic databases for these forms — eMOLST is New York state’s version. Lawmakers are considering a bill that would require doctors to submit an electronic version when they fill out a hardcopy within 14 days.

In theory, this would ensure access to the form no matter which clinic or hospital a patient may end up in during an emergency, explains Patricia Bomba, vice president and medical director of geriatrics at Excellus BlueCross BlueShield and director of the MOLST program.

“It just is the better way to do it,” she says.

Excellus currently funds the MOLST and eMOLST systems, 100 percent.

But even the electronic solution has its own problems to work out.

“Even if you fill out one of these forms — having it actually pop out in front of the right person at the right time has been a really big challenge,” says Kirsten Ostherr, a Rice University professor focusing on health and medical digital media.

There are major access issues, Ostherr says, in general, when it comes to electronic medical records. For one, different hospital electronic record systems don’t link to each other or to the E-MOLST database, which is separate. And outside providers, like paramedics don’t usually have access to these systems.

The current eMOLST system is just not accessible for busy doctors, explains Daniel Mendelson, director of palliative care and associate chief of medicine at Highland Hospital in Rochester.

“Expecting a medical provider to look in their own record is reasonable. Asking them to look at an outside record and multiple outside records is probably not going to happen,” he says.

Mendelson was on the original team that developed the paper MOLST form in New York. He’s a self-described “power user” and embraces technology. But he doesn’t use eMOLST because it doesn’t directly connect to the system his own hospital uses for patient information.

For his own father, he trusts the paper form more than the eMOLST system.

“It’s not that people are not hardworking and well meaning, but how many tasks can you load somebody with in an emergency?” Mendelson asks.

At least two hospitals in New York state have successfully developed a direct connection between an electronic health records system and eMOLST.

The in-house information technology team at NYU took a few months to work on the connection, start to finish, according to Christine Wilkins, advance care planning program manager at NYU’s Langone Medical Center. Providers can use one password to sign on and view medical records and a patient’s eMOLST.

Wilkins says they hope the easier to use technology will help doctors start using eMOLST more. And that will ultimately benefit patients.

“It’s about having a more robust conversation, but then, it’s having a much better way to document what their wishes are. And for that documentation to be seen across the board,” Wilkins says.

Another hospital, Orange Regional Medical Center, in Middletown, N.Y. also established single sign on for its providers earlier this month.

Currently, the eMOLST system has roughly 10,000 patient files, according to Katie Orem, eMOLST administrator at Excellus BlueCross BlueShield. That’s about 10 percent of New York state residents who die from chronic disease every year, she says. If the bill passes, New York would have a statewide database.

Complete Article HERE!

September 21, 2016September 21, 2016

How doctors are failing us in death

Never mind assisted-dying, our health care system needs to change the way it deals with the natural end of life

By Mohamed Dhanani

Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. "The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions," writes Mohamed Dhanani. "This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud." — Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. “The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions,” writes Mohamed Dhanani. “This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.”

I’ve spent much of my career in the health care field, but it took a very personal experience to drive home just how poorly prepared health care providers are to help us through the one certain life-experience that awaits us all: death.

It happened in a hospital in southern Ontario. My father-in-law, Ijaz Ahmad, who lived with insulin-dependent diabetes for 35 years, went into the hospital for a partial foot amputation due to a bone infection.

Prior to surgery, a routine diagnostic test was performed requiring dye to be inserted into his bloodstream. After the surgery, the dye put him into kidney failure while it was being metabolized. Within a day of the surgery all of his organs started to fail and he was put on life support for what we were told would be two to three days so his organs could rest and strengthen — after which, we were told, “the doctors would bring him back.”

He spent the next 18 days on life support. And what became clear over that long 18-day ordeal is that what had clearly become the end of his life would have been unnecessarily prolonged depending on which of the eight doctors we interacted with was treating him that day.

Like so many families who have had the difficult but essential conversation with an aging parent around their end-of-life wishes, we had spoken with him about his wishes. He was clear he did not want to be on life support.

The eight doctors who treated my father-in-law all had different ideas about what those wishes meant, and how involved the family should be in making treatment decisions. This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.

Some of the doctors acknowledged his wishes but said life support was an essential part of the treatment plan; it was just a temporary measure to aid in his recovery. Others made very little effort to consult with us, and another outright refused! Another doctor assured us he would “bounce back,” though nurses told us this was increasingly unlikely and that the doctor was prone to sugar-coating discussions with families.

Because of this inconsistency, different members of my family were hearing different things — and that made it even more difficult for us to make a decision we all felt comfortable with. Finally, I pulled aside the latest doctor treating my father-in-law and asked him for an absolutely frank and direct discussion. Only then were we able to make an informed decision that respected my father-in-law’s wishes and provided as much comfort as possible to our family.

On my father-in-law’s 18th day on life support, and on what was to be the final day of his life, a new doctor was treating him. This doctor had trained and practiced in the U.K., and had only recently started to work in Ontario. His European training and experience gave him a different perspective on end-of-life care, and one for which we were grateful.

In Europe, the societal conversation on end-of-life care is more advanced than in Canada — they have grappled publicly with these essential issues of decision-making in health care for many years, and physicians have therefore become more comfortable discussing end-of-life decisions with their patients and families.

Not only is this an essential conversation we need to normalize as families and as a society, it is something our health care system must take on as an essential part of its work. All doctors must be trained to discuss end-of-life care in a direct and compassionate way with patients and their families. This will only become more important as people live longer, and as their health issues become more complex as they reach the end of their lives.

Over the last few years, Canadians have engaged in an impassioned debate on assisted death, a debate that culminated in landmark — and controversial — legislation in Parliament. But assisted death is just a small part of the issue.

As my family’s experience illustrates, end-of-life care and the difficult discussions surrounding that care are too inconsistent — inconsistent between institutions and inconsistent between doctors within a single hospital. It is something we can and must fix.

Surrounded by family and friends my father-in-law peacefully passed away within minutes of removing the breathing tube. He was 66 years old. May his soul rest in eternal peace.

Complete Article HERE!

September 17, 2016September 16, 2016

Take control over the end of your life: what you need to know about advance care directives

By Nola Ries

Many agree on the factors contributing to a good death. People want to be treated with dignity, have relief from pain and, as much as possible, to control what happens to them.

Advance care planning is one way to exercise control. The process involves discussing and expressing preferences about the kind of care you would or would not want in a situation where you lack the mental capacity to make decisions.

As part of this process, you can write an advance care directive – a document that can be legally binding. It states your views and instructions about health care and other personal matters.

You can also appoint someone you trust to be you health care decision-maker. Despite its usefulness, only a small number of Australians (around 14%) currently have an advance care directive.

Why have a directive?

Studies show at least one-third of patients receive non-beneficial treatments at the end of their life, including tube-feeding and surgical procedures when there is little hope of the patient getting better. This is despite many older Australians saying they do not want medical interventions to keep them alive when their quality of life is poor.

With a good advance care directive in place, people are more likely to have their wishes for care respected. People with a directive are also more likely to experience fewer unwanted medical interventions, less likely to be moved from their home or community care to a hospital, and less likely to die in a hospital.

If a patient who doesn’t have a directive is seriously ill and unable to communicate, doctors will consult with family or others close to the patient about their care. Family members and caregivers often experience stress and guilt when making decisions for a loved one at the end of their life. These decisions are made easier if they are guided by the values and preferences expressed in an advance care directive.

Are directives legally binding?

In Australia, the legal context for advance care planning is complicated as every state and territory has its own laws, but they have common principles. For instance, each law respects the right of an adult who has mental capacity to plan in advance for their health care.

There are two kinds of directives: statutory and common law. A statutory directive means the person completes a document that meets specific government requirements – such as this one in South Australia or this one in Queensland. This week, the Victorian government introduced a bill to parliament to make advanced care directives legally enforceable.

New South Wales and Tasmania don’t have statutes that create forms for advance care directives, but people can make common law directives. This means they can state their health care wishes in their own way and they can be legally respected.

In 2009, the NSW Supreme Court ruled that a hospital had to follow the medical instructions a man had recorded in worksheets. The man was hospitalised with serious illness, lost consciousness and went into kidney failure. The court said the hospital had to respect the written instructions that refused blood transfusions and dialysis.

States that have statutory advance directives may also allow a person to make a common law directive. So it is not always necessary to use a government form. People interested in making an advance directive or appointing a health-care decision-maker should look up the rules in their state or territory; there are some good websites with accurate information.

What’s in a directive?

People often think of an advance care directive as a document that refuses consent to specific treatments. For example, you can specify you don’t want CPR or tube-feeding if you have a life-threatening medical problem with little chance of recovery.

This is true. But directives can also be used to document your values, say what quality of life means to you and specify if you have spiritual or lifestyle beliefs you want respected. For instance, you can write down things that would help create a home-like environment if you have to be cared for in a facility, such as music you would like to listen to or treasured items you would like in your room.

A person might complete an official statutory form to appoint someone as their health-care decision-maker, then attach a statement of values.

A statement of values, wishes and preferences can be helpful for appointed decision-makers and for care providers. Websites such as My Values can help you consider issues about medical care and dying you may not have thought about before.

What else do I need to know?

You are encouraged to review your advance care directive, and other legal documents, to make sure they are up-to-date and reflect your current wishes and instructions.

It is also vital to share your directive with your health-care providers, appointed decision-maker (if you have one), family members and other loved ones who may be called on to help make decisions. Doctors cannot follow a directive if they don’t know it exists.

There is no mandatory central registry in Australia to make sure doctors have access to directives when needed. But people with an electronic health record – known as My Health Record – can include their advance care directive information there.

Advance care planning is typically promoted in health-care settings. But some people are more likely to talk to a lawyer than a doctor about their health wishes. This often happens when a person seeks legal help on other aspects of future planning, such as writing a will or appointing a financial decision maker.

I have argued that legal and health professions can work together more effectively to help their clients plan for their future health care. Doing so promotes their clients’ interests and autonomy. It makes sure people’s values and wishes are known, even beyond a time when they can no longer speak for themselves.

Complete Article HERE!

August 31, 2016August 26, 2016

We doctors see death all around us, but we don’t like to think about our own

By Daniel Marchalik

I bought Paul Kalanithi’s memoir, “When Breath Becomes Air,” the day it came out and set it down on my kitchen table unopened. Several of my best friends from medical school did likewise. We had read Kalanithi’s recent articles and knew the story of the Stanford neurosurgery chief resident diagnosed with metastatic lung cancer — a diagnosis that 22 months later would prove to be terminal.

But instead of jumping in, for several weeks we shared email exchanges about what we could expect to find, afraid to confront the actual words on the page. We were all at the end of our residency training (several of us, including me, in surgery), and reading the book, we knew, would make real a fear that no scientific articles and patient stories could: that terrible and unexpected things happen to doctors, too.

[Paul Kalanithi’s parting wisdom]

I had never really thought about the way physicians die, even though I was seeing so much death around me. But in hospitals, death can feel routine. We encounter it in intensive care units, on the floors and in the trauma bays; we see it happen to elderly patients with dementia, to newborns and to healthy teenagers. And yet I cannot think of any colleague who does not consistently draw a hard line of separation between what happens to “them” — the patients — and what can happen to “us.” There is an otherness to the bizarre accidents and the exceedingly rare cancers: In hospitals filled with unlikely catastrophes, the statistics are always on our side.

We trust in the double standard: one recommendation for our patients, a different one for ourselves. We routinely counsel patients on their end-of-life care, and we inquire about living wills before surgery. But in asking around, I learned that none of my fellow residents have living wills, designated proxies or advance directives. I don’t have them either, nor have I had a real discussion about what I would want done if the worst-case scenario occurred.

“None of my fellow residents have living wills, designated proxies or advance directives,” writes Daniel Marchalik.

I did end up having a conversation with my best friend, an oncology fellow. “You would know what I would want,” I said to him rather nonchalantly, expecting this to be the end of the conversation. “Of course,” he said, “so do you. We’ve always been on the same page.” We easily agreed that neither of us would want prolonged breathing or feeding tubes, or holes made in our windpipe, or ending up stuck in a coma. Unless, of course, that coma was reversible.

“What percent chance of reversibility?” he asked. I didn’t have an answer — “I guess 5?” My best friend, it turned out, would draw the line at 2 percent, but not if there’s significant brain damage involved. How much brain damage is significant? As we considered our end-of-life preferences, it became clear that neither of us knew what the other would want because we had never actually thought through our own stances.

Physicians, like most people, do not want to discuss the implications of their own mortality. We forgo difficult conversations, assuming that our wishes would somehow be innately known by our friends and families. Haven’t we always been told that all doctors want the same thing? Indeed, a 2014 survey confirmed that an overwhelming majority of physicians — almost 90 percent — would choose no resuscitation. Most doctors also report wanting to die at home rather than in a hospital.

Perhaps it is these general assumptions that make physicians not feel the need to explicitly discuss and outline their end-of-life preferences. In a survey of almost 1,000 physicians whose mean age was 68, almost 90 percent thought that their family members were aware of their wishes for end-of-life care. Almost half of those surveyed did not think their doctor was aware of their end-of-life choices, with 59 percent of those participants having no intention of discussing these wishes with their doctor in the next year.

But we know that conversations about proxies and advance directives should happen long before they need to be utilized.

A 2016 study found that physicians were as likely to be hospitalized in the last six months of life as were non-physicians. On average, they also spent more days in intensive care units at the end of life and were as likely as others to die in a hospital.

So why are doctors dying in hospitals and in intensive care units instead of at home, when we know that their wishes tend to align with avoiding extreme measures at the end of life? My best guess is that physicians and non-physicians alike are skilled at believing that bad things happen only to others. Repeatedly witnessing tragedy does nothing to temper this human tendency.

At the same time, questions about the end of life are never easy even if we try to pretend that they are, and dealing in absolutes and generalities is seldom helpful. We see patients spending years on life support or clinging to hopeless cancer treatments and agree that we would never want that road for ourselves. Most of the time, however, the issues are markedly less clear. Often, the calculus shifts as life itself changes, as the needs of significant others and children become factored into the equation.

For that reason, living wills or designated proxies cannot exist in isolation. Instead, these questions must begin with a lot of self-reflection and difficult conversations with our loved ones. But none of that can happen until we come to terms with the unsettling reality of our own mortality. Not reflecting on or discussing it, like not picking up a book, does not change our reality: that illness and death are often unpredictable, and that this is as true for us doctors as it is for our patients.

Complete Article HERE!

August 30, 2016August 26, 2016

Comfort Care is ‘Good Medicine’ for Patients with Life-Limiting Conditions

By Kaylyn Christopher

On Tuesday mornings on the third floor of the University of Virginia Medical Center, Ken White, professor and associate dean of strategic partnerships and innovation at UVA’s School of Nursing, meets with a team of health care professionals to receive patient reports.

Throughout the day, White will encounter patients with life-limiting conditions and will work with them and their families with one goal in mind: decreasing suffering by determining how best to improve their quality of life.

Such is the mission of White’s specialty, palliative care.

Dr. Tim Short, Dr. Joshua Barclay, and Ken White, a registered nurse and nurse practitioner, specialize in palliative care at the University of Virginia Medical Center.

Working in this space is sacred work,” White said. “We are invited into the lives of people we don’t know, at a time when it’s difficult for everyone. We have to instill trust in people because this is their most vulnerable time.”

White’s shift into palliative care came while he was a health care administrator doing research on the economic benefit it could provide to his organization.

“My research showed that it improved quality of life and patient satisfaction,” White said. “It turns out there’s an economic benefit to palliative care, too, but that’s not why we do it. We do it because it’s good medicine.”

White, who is also a registered nurse, adult/gerontology acute care nurse practitioner and a certified palliative care nurse practitioner, said educating others on the benefits of palliative care can lead to drastically improving the quality of life for many patients and can also help patients’ families cope with the circumstances.

“We want to give all caregivers some base knowledge in palliative care,” he said. “This type of care is a real gift to society, our patients and their families. So investing in this is only going to make everyone give back more compassion.”

To advance those efforts, the School of Nursing, School of Medicine, Hospice of the Piedmont and Sentara Martha Jefferson Hospital are collaborating to make education available through the Third Annual Melton D. and Muriel Haney Interprofessional Conference, “Honoring Differences at the End of Life,” to be held Sept. 17.

In an interview with UVA Today, White emphasized some of the benefits of and challenges to palliative care.

Q. What exactly does palliative care entail?

A. We work with quality-of-life issues, so we try to get to the heart of what makes people tick and what they live for. Then, we work with the symptoms of their disease and sometimes the symptoms that result from their treatments. We also work with primary physicians and their teams to add a layer of support to families in decision-making.

Often, these topics are hard to discuss. In our society, we don’t really bring up death and dying, and in many cases, people aren’t prepared with advance directives, which are written legal documents that state a person’s wishes when he or she can’t speak for him- or herself.

Q. What are some common myths about palliative care?

A. There is a distinction between hospice and palliative care, and that often creates confusion. Palliative care is the science and philosophy of caring for people. Hospice, in the U.S., is a Medicare insurance benefit and goes into effect when two physicians sign saying the person has a terminal diagnosis and has six months or less to live. We do partner with hospices, though, with the goal of getting patients back to their homes or in their local communities.

Another thing is that not all palliative care is end-of-life. Palliative care can start when the diagnosis is made. End-of-life is just the final hours in the patient’s last days.

Q. How do you handle the sometimes difficult conversations that come with the territory of palliative care?

A. We start with identifying the goals of care by asking questions like, “What do you want this treatment to do for you?,” and when there’s a treatment that we know is not going to work, or it’s been tried and didn’t work, when there’s nothing else that we can try, we have to let them know. Ultimately, we want to help decrease suffering as much as possible.

Q. What are some other challenges to palliative care?

A. A lot of patients come from rural areas, and access to palliative care in rural areas is not very good. We’re trying to promote new and better ways to address this, and are talking about ideas like using telemedicine.

There is also some focus on honoring differences in cultural and spiritual diversity when it comes to palliative care.

Q. Have you noticed any societal shifts in recent years in terms of the approach to palliative care?

A. Nationwide, in the last 10 years, there has been a meteoric rise in the number of hospitals that have palliative care services. We also have more training programs. There is a specialty program here at UVA in the nurse practitioner program that focuses on palliative care, because there still is not enough supply to meet the demand for physicians and nurses with this kind of training.

Q. What do you think practicing clinicians as well as members of the community have to gain from education on the topic?

A. There is a big need to educate all caregivers about palliative care. There are two types of palliative care: primary and specialty. Specialty palliative care is located in places like UVA, but for the average, small hospital in America, caregivers can practice primary palliative care and can learn enough about it to integrate it into their practice without referring to specialists.

The more people know about this topic, the more likely they are to request palliative care or have their own advance directives filled out.

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