Advance Directives – Page 29 – The Amateur's Guide To Death & Dying

June 24, 2015

How to plan for a good death

Sheila Kitzinger, the natural childbirth activist who died in April, pioneered the idea of birth plans. Her daughters, Celia and Jenny, describe how their mother made a death plan – so she could die at home according to her own wishes

By Celia and Jenny Kitzinger

Our mother, Sheila Kitzinger, champion of women’s rights in childbirth, died in April. In writing her own fantasy obituary for a newspaper many years earlier, she imagined dying at the height of her powers: “She died as she would have wished, flat on her back on a table with her legs in the air, in front of a large audience, demonstrating with vigour the dangers of making women lie down, hold their breath till their eyes bulge and strain as if forcing through a coconut to push a baby out. She claimed that treating the second stage of labour as a race to the finishing post … could result in cardiac arrhythmia and even a stroke. She made her point.”

Rather than the melodramatic early death she conjured up here, Sheila died quietly at home surrounded by her family, at the age of 86.

Sheila spent her life campaigning for autonomy and choice in childbirth and challenging the medicalisation of birth. She pioneered birth plans to support women in making their own decisions. When it came to dying, she expressed the same values of choice and control, and she planned ahead. She appointed one of our sisters, Tess, with lasting power of attorney for health and welfare and also wrote an advance decision. This preparation was invaluable in ensuring that her choices were respected and in allowing her to die at home as she wanted.

Being at home was essential to her idea of a “good death”. She wanted to be in familiar surroundings, on her own territory, with the support of those who knew her. She particularly did not want to go into hospital, aware as she was of the cascade of interventions that can befall people at the end of life, just as they can women in childbirth.

In her autobiography, she records that Cicely Saunders, founder of the modern hospice movement, once said to her backstage at a conference where they were both speaking, “You and I are doing the same work.”

Her concerns about hospital treatment had also been cruelly refined and reinforced by our family experience of the treatment of our sister, Polly, who was severely brain injured in a car crash six years ago. We were all very aware of how institutions have their own systems, policies and agendas that can strip control from the individual.

Sheila wrote about her own mother’s death decades earlier. Following a brain haemorrhage, her mother could no longer swallow, and Sheila resisted a feeding tube. “I consulted Father and we both agreed, ‘No. She would want to be at home. She wouldn’t want invasive procedures.’ Later he told me that he wished he had the courage to care for his father that way when he was dying. Instead, he had him admitted to hospital and everything was done to prolong his life by every means possible. Looking back on it, he thought it was wrong, and now he felt guilty.”

At 86, Sheila had cancer and many other diseases of old age. After the first bout of cancer a year earlier, she had accepted treatment. When the illness returned she declined further investigation or intervention.

As her health declined she lost interest in eating or drinking – it was painful to watch her become progressively thinner and more frail. At times she was able to enjoy someone reading to her, she would gamely invite the family join her to sip a little sparkling wine or eat a chocolate, and the ritual of tea at 5pm still seemed to give her pleasure. But it was deeply distressing to witness how vulnerable she became.

In the last few months of her life, Sheila stopped talking about planning her next book and talked with us about her wishes for her death. She also revisited and confirmed the short advance decision (AD) she had written some years earlier. This was a single paragraph (signed and witnessed, and legally binding on her carers and medical professionals) which declared: “If the time comes when I can no longer take part in decisions for my own future, I want to receive whatever quantity of drugs can keep me free from pain or distress, even if death is hastened. If there is no reasonable prospect of recovery I do not consent to be kept alive by artificial means. I do not wish to be transferred to hospital and should like to die in my own bed.”

Except for the last few days, when she was unconscious, Sheila was able to communicate her wishes herself. But her AD was immensely valuable in supporting her choices. Her GP surgery tried to insist, a few weeks before she died, that Sheila should be transferred to hospital after a “mini-stroke”. She said no. The GP questioned her mental capacity to refuse hospitalisation. We read out her AD and she stayed home.

Later her AD was useful when another doctor was considering transferring Sheila to hospital to clarify her diagnosis and it helped her to avoid various interventions. One of the last whole sentences Sheila said was, “I decline antibiotics if I get pneumonia” and, later, she nodded when offered morphine. Anyone in doubt about her capacity to make her own choices, or concerned to ensure they had done everything possible as a healthcare professional, could read her AD or talk with her LPA for health and welfare – and be empowered to provide “person-centred care” with confidence that they knew what her wishes were.

Sheila Kitzinger's coffin — Sheila Kitzinger’s simple cardboard coffin at her home, decorated by her family with peacock feathers and pictures of birds.

A home death is not right for everyone. We were lucky that Sheila’s symptoms were well controlled, and that’s not always possible at home. The whole situation placed many demands and stresses on the whole family. However, once it was (belatedly) agreed that she was at the “end of life” we were provided with well-coordinated NHS support. It also helped that we are a large family so when one of us was at the end of her tether, another could step in.

This support structure allowed Sheila to die, as she had lived, on her own terms. It also allowed us to have positive memories of the last weeks of her life – and that now helps us with our grief.

Sheila’s burial reflected the values she had lived by – and was shaped by her own distinct choices. She was critical of the “business” of funerals and preferred not to have her body handed over to the professionals. Instead, the day after she died, we – her daughters – washed and dressed her body one last time and carried her downstairs to place her in a bright orange cardboard coffin, decorated with peacock feathers.

Sheila opted for a simple, private burial – much to the surprise of some friends and colleagues who had expected an opulent public funeral extravaganza. Sheila wanted her body buried “without fuss”. So we carried her coffin from the house, to a tune from our time in Jamaica in the 1960s, placed it in the back of a car, and drove to a woodland burial ground. We lowered the coffin into the ground, scattered it with sprigs of rosemary and camellia blossom from our lovely garden and read some of Sheila’s own poetry:

“After the soaring, a peace
like swans settling on the lake
After the tumult and the roaring winds,

Silence.”

May 28, 2015May 28, 2015

Wisconsin is learning how to die

by Sarah Kliff

La Crosse is a small town in western Wisconsin, right on the Minnesota border. It has about 51,000 residents. And La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die.

“One of our doctors recently told me that making a plan is just like taking blood pressure or doing allergy tests,” says Bud Hammes, a medical ethicist at Gundersen Health System, one of La Crosse’s two hospital networks. “It’s just become part of good care here.”

End-of-life care planning is not currently a routine part of medical care in the United States. Most surveys show that about a quarter of American adults have completed an advance directive, spelling out what type of treatment they would want in a medical crisis where they could no longer make their wishes known.

Making a plan is just like taking blood pressure or doing allergy tests. It’s just become part of good care here.”Americans don’t plan for death because health insurance plans don’t typically pay for that sort of planning, the way they cover blood tests or MRI scans. Medicare, which covers Americans over 65, certainly doesn’t pay for end-of-life care planning: when the Obama administration proposed such an idea during the 2009 health reform debate, it quickly spiraled into talks about “death panels” and “pulling the plug on Grandma.”

The dearth of end-of-life care planning in the United States often means that lives end in chaos, with families confused and overwhelmed trying to think through what their loved ones would want.

“It’s one of the most uncomfortable things,” says Donn Dexter, a neurologist in Eau Claire, Wisconsin, about a two-hour drive north of La Crosse. “The family can be so at odds, and the patient has not made clear what they want. I’ve seen families just torn apart by this, and their loved ones tortured with prolonged, futile treatment at the end of life.”

When La Crosse started talking about death in the mid-1980s, a few patients were annoyed. People who turned up at a physical and had a doctor ask about their end-of-life preferences were, understandably, confused.

“Patients were sometimes upset or anxious, like, ‘Why are you bringing this up? Is there something wrong with me?'” Hammes says. “There were lots of strong emotions and this sense that this was only for people at the end of life and dying. We had to work really hard to convince people we wanted every patient to have this discussion.”

But doctors kept asking, until patients got comfortable. And there were never any accusations of “death panels” or “rationing”: the program seemed to work because it was grassroots, rather than imposed by the government or some other large entity.

The story of La Crosse — and how its approach to end-of-life care is quickly, quietly spreading across the Midwest — gives some reason to be optimistic about the future of end-of-life care in America. It suggests that it is possible to move beyond death panels, and for doctors to have frank conversations with patients about how their life will end. The trick, it seems, is making these conversations feel like a natural part of the doctor-patient relationship, rather than a mandate imposed by a menacing bureaucracy. The only problem is this: for programs like La Crosse’s to work on a national level, the federal government is eventually going to have to get involved — and pay doctors for this type of service. Is that something America will ever be ready for?

“Situations where it wasn’t clear what was best”

La Crosse’s push to get its residents to talk about death began in the 1980s, when Hammes joined Gundersen to develop a curriculum for the moral quandaries that medical students would go on to face as doctors. He shadowed some students to get a sense of the issues they confront.

“What I witnessed with such frequency were situations where it wasn’t clear what was best, and the patient’s perspective would help resolve that question, but we couldn’t get that perspective,” he says.

Hospitals don’t know when patients will die. But they do know death will happen — and can plan for that.

As an outsider to the medical system, Hammes found this baffling. Some of these patients had been in the hospital’s care for decades. While it was impossible to predictwhen a patient would die, the hospital clearly knew, with great certainty, that all lives end. Yet there was no apparent planning for that moment.

Hammes suggested that the hospital start talking to patients about death. They started with a small group of 60 patients with kidney failure. They and their families talked about priorities in medical care and whether they would want to continue living if they lost awareness of who they were, or where they were.

“What we noticed is that as we had those conversations, the conflicts became less frequent,” he says. “The norm became the family saying, ‘We know what to do; we had a conversation.'”

The success of Hammes’s pilot encouraged Gundersen and the other hospital in town to expand the program to the entire city. They would work not just with patients who were facing imminent crisis, like the dialysis group, but with any adult in the system.

By 1995, 85 percent of La Crosse residents had an advance planning document on their record. In 2008, it hit 90 percent. These documents were effective: researchers foundthat among those who died, the care they wanted nearly universally aligned with the care they received.

All of this happened without political blowback. The movement to talk about death spread quietly, from doctor to doctor and patient to patient.

And, perhaps most surprisingly, the La Crosse conversations appeared to save money. The city has some of the lowest end-of-life spending in the country; people who die in La Crosse spend approximately 32 percent less than the average Medicare patient in their last six months of life, the Dartmouth Atlas of Health Care shows.

This suggests something broken about the way end-of-life care usually works: it is much more intense than patients desire. When patient preferences are known — as they almost universally are in La Crosse — people tend to select less aggressive courses of treatment. And this is what has earned the La Crosse model so much praise: it’s shown a meaningful reduction in health spending as a side effect of respecting patient wishes.

And that’s why there’s a now a movement to bring the La Crosse program to the entire state of Wisconsin.

“We want every adult to have the conversation,” says John Maycroft, who oversees policy at the Wisconsin Medical Society, a doctors’ advocacy group. “It’s about the conversation. And the document is of course important, but if everyone can have this conversation, we’d all be better for it. We could shift the culture in a big way.”

“Do you have thoughts about what you would want to happen?”

The name of the program La Crosse developed is called Respecting Choices. It’s essentially a script for having conversations about the end of life. The idea is to have patients talk about the type of care they would want if they could no longer speak on their own behalf, like after a serious car accident.

What makes Respecting Choices work is that it’s formulaic. It gives structure and steps to what is otherwise a difficult conversation — the type of conversation that medical school doesn’t prepare doctors to have. Those trained in the curriculum say having a script to follow is essential; they know exactly what information they need and how to get it. And they’re forced to practice, over and over again, until it feels like second nature.

I had Mia Morisette, an advance care planning coordinator for University of Wisconsin Hospital and Clinics, go through the script with me. In her distinctive Wisconsin accent, she started by asking me what I knew about advance directives — how they worked and why they were important. And she asked me to reflect on what I’d seen, in my own family, with the end-of-life experience going well or poorly.

A difficult conversation is guided by a script — making the interaction much less awkward

I told Morisette a bit about my grandmother who died in 2010. One of the things I remembered being stressful for family members was the notion of doing everythingpossible. There seemed to be a tremendous desire for everyone to walk away from the ICU thinking, “At least we did everything we could.” Sometimes that desire could override what was actually the best for my grandmother’s care. I didn’t want my family to have that type of burden, I told her.

Without knowing it, I had moved on to the next part of Morisette’s script: what I would want. Morisette had a very specific thing she wanted me to think about. I didn’t need to think about what I would do if I got a cancer diagnosis or found out I had a year to live. If that happened, we could revisit my options. Instead, she wanted me to think about a situation where I wouldn’t be able to make my care preferences known.

“Consider a situation where a serious car accident left you unable to communicate,” she said. “You’re receiving medical care to keep you alive, but there’s little chance you’ll ever recover the knowledge of who you are and who is around you. Do you have thoughts about what you would want to happen?”

I asked Morisette to define “little chance,” which she estimated to be around 5 percent.

Then I was stuck. I sat on the phone silent for a moment. Even as a reporter on these issues, I didn’t know what I wanted — generally, my hunch was to stop treatment with such long odds in my favor. But I also had a nagging voice wondering about that 5 percent chance.

Morisette told me this was all normal; this was the point of having the conversation in the first place — to have these thoughts, and to work through them. Most of her consultations usually take three or four visits to fully complete.

“It’s not all at once,” she told me about the process. “Sometimes it helps just to use the first conversation to get in the frame of mind.”

“We eventually want everyone to have this conversation”

Maycroft of the Wisconsin Medical Society started working on bringing the La Crosse model statewide in March 2013. Minnesota had done the same thing a few years earlier, to generally positive results. Minnesotans, in 2014, showed higher rates of end-of-life planning than the national average.

The Wisconsin program started small, with six hospitals piloting La Crosse’s model elsewhere in the state. Over two years it’s grown steadily, up to 23 health-care systems. And the ultimate goal is to, in a decade or so, make Wisconsin look like La Crosse, with every resident having a plan for death.

“We eventually want everyone to have this conversation,” says Maycroft. “I want to show that this can be done, that it’s something Wisconsin can do and that other medical societies can do. We’re here for Wisconsinites, but we also want to be a national model.”

I was surprised to see that Wisconsin had moved this program forward with little public protest, given the fierce fight over death panels that happened in Washington a few years ago. But even more than that, the thing I found most baffling about the La Crosse model’s growth was that hospitals earn no money from having these conversations.

“We got no reimbursement,” says Hammes of launching the program in La Crosse. “For the hospital, this would lose money.”

“I want to show that this can be done, that it’s something Wisconsin can do and that other medical societies can do”

Whenever doctors do anything — whether it’s a blood test or brain surgery — they charge the patient’s health insurance plan a fee. Doctors, like lawyers, are constantly billing for the time they spend talking to or operating on patients. I’ve written on the health industry for six years now, and I’d never heard of a service that hospitals don’t charge for, like these end-of-life consultations.

Reimbursement would certainly help, Maycroft and others told me. But there’s also a risk that comes with formalizing the program: the vicious debates that happened when the Obama administration proposed paying doctors for this exact type of conversation.

“We haven’t asked for any legislation,” Maycroft says. “The state knows about us, but we’re not asking for any kind of money. We’ve avoided the death panel accusations.”

This makes it easier for programs like his to fly under the radar — but is also a limiting factor for expanding. Not all hospitals will want to do this type of work out of the goodness of their own hearts — and even hospitals that are on board have difficulty committing resources to a program that doesn’t pay.

“The biggest challenge for us is financial,” says Toni Kessler, the ethics manager at Community Care, a hospice provider participating in the Wisconsin program. “I spend a lot of time talking to our finance people, anyone I can get in front of. But it can be a tough case to make when we don’t get reimbursed.”

Minnesota, whose program began five years before Wisconsin’s, made its first request for state money last month, pushing for a bill that would fund the advance directive program.

“The day we introduced our legislation someone else dropped a bill relating to physician-assisted suicide,” says Sue Schettle, executive director of the Twin Cities Medical Society. “And I was thinking, ‘If there’s ever day where this issue would blow up, this was it. I was dreading reading the next day’s newspaper.'”

The explosion never happened. “Maybe it’s our Midwestern nature, that we’re just putting our heads down and getting to work,” Schettle mused to me.

Maycroft thinks the Wisconsin program can go forward for some time without any funding. So far, hospitals have paid his organization money to get trained in end-of-life care conversations, and that has kept the effort afloat.

At the same time, getting insurers and Medicare to reimburse for these conversations remains an important and challenging goal. Maycroft sent me a follow-up email on this point shortly after we talked.

“I’m not sure I expressed well just how much Medicare and insurer reimbursement would help us,” he wrote. “Our participants’ willingness to do this without reimbursement has been impressive, but (and feel free to quote me on this) Medicare reimbursement would make a huge difference. Our participants are doing everything they can, but sustainability of these programs will be a challenge without reimbursement.”

The lack of reimbursement for end-of-life planning suggests a limit to how far the La Crosse model can spread. It currently relies on the willingness of hospitals to donate their time, essentially having doctors volunteer time out of their already busy days.

Going national would almost certainly require Medicare to start paying for these conversations. And maybe, with programs like those in Minnesota and Wisconsin, Washington will begin to get ready.
Complete Article HERE!

May 19, 2015

Too young to die: Even elderly put off talking about end of life

By Ruth Gledhill

Less than a third of people have discussed what they want to happen at the end of life. Just four per cent have written advance care plans for when they are dying. Yet more than two thirds of people questioned say they are comfortable talking about death.

old-age — Even older people are unlikely to discuss what will happen at the end of their lives.

The NatCen survey of more than 1,300 people showed seven in ten want to die at home. This is at a time when six in ten people die in hospital.

The research, commissioned by Dying Matters Coalition, examines public attitudes to issues around death, dying and bereavement.

While people have strong views about the end of life, they are still unlikely to have discussed their own death. This was mainly because people felt death was a long way off or that they were too young to discuss it. Nearly one in ten of people aged 65 to 74 years old believed they were too young to discuss dying.

Three in ten people had never seen a dead body. Just one per cent of the sample said they would go to a minister, pastor or vicar for information about planning the end of life. Most people’s preferred choice for seeking information was a friend or family member, or their GP.

This was despite the fact that nearly seven in ten of the respondents described themselves as Christian. Nearly two in ten said they were atheist or had no religion.

Professor Mayur Lakhani, chair of Dying Matters, said: “As a practising GP, I know that many people feel frightened to talk about death for fear of upsetting the person they love. However, it is essential that people do not leave it until it is too late. Planning for needs and wishes helps you to be in control, and it helps those we leave behind.”

One carer said: “It’s not easy to talk about end of life issues, but it’s important to do. Now that we’ve put our affairs in order and are talking about what we want, we can ‘put that in a box’ as it were, and get on with living one day at a time, cherishing each day together, as I know it’s going to end one day.”

A bereaved widow said: “If you talk about dying, you can say everything you want or need to. There are no regrets.”
Complete Article HERE!

April 22, 2015

What happens to your Facebook profile after you die?

Your online accounts and profiles can live on after you die. Here’s how to plan for your digital afterlife

By Jeff Blyskal

Life used to be so simple. You lived, you died, and the assets you amassed during your time on earth were passed on to your heirs. Now, however, there is some new unfinished business that needs to be taken care of before you go: your personal digital assets.

What are these? Well, your Facebook wall is one of them. The digitized thoughts, photos, and videos that you post there are stored at data centers in the U.S. and Sweden. And think about all of the other Internet services with storage features that you’ve come to rely on—among them mobile bank accounts, online mutual-fund accounts, and bill-pay accounts.

If you write a blog, you may have years of published material online. If you operate an Etsy account, sell stuff on eBay, or own an online business, you have even more property scattered about on so-called cloud servers. We’ve all amassed a king’s ransom of those personal digital assets. One study released by McAfee, the security technology company, estimated their average value at almost $55,000 in the U.S.

The problem is, “after you die, there’s no one monitoring all these assets anymore, which makes them vulnerable to theft,” says Gerry W. Beyer, a professor at Texas Tech University School of Law and a leading expert on the estate-planning aspects of digital assets.

Complicating matters, secret usernames, passwords, and other login codes used to keep intruders out die with you. That makes it very difficult or even impossible for your survivors to take proper control of your digital assets. State laws granting rightful access to survivors are in their infancy, while user agreements usually bar access by others to protect their customers’ privacy.

Here is Beyer’s advice for properly protecting your digital afterlife.

Start with an inventory

Because it’s easy to save frequently visited website addresses on your Internet browser’s bookmarks bar, the first entry in your paper-based inventory should be a list of the usernames, passwords, and other login access codes to your computers, tablets, smart phones, and other connected devices. Do the same for your encrypted hard drives, flash drives, and other storage devices; encrypted home network routers; voice mail; and any fobs, cards, or other physical digital-key devices that require multifactor authentication security.

Your inventory on paper should then list the Web addresses where your trusted agent can access your account-login pages, along with the necessary e-mail accounts, usernames, passwords, security codes, and login procedures. Don’t forget the information needed to reset the password, often your e-mail address where a reset code will be sent, and the secret “Who was your best childhood friend?” question(s), whose answers only you know.

Find and appoint an agent

Because there may be indecorous photos or e-mails or other digital secrets you don’t want your survivors to see, take steps to prevent a family National Enquirer eruption. Neatly segregate the indelicate material from the harmless, find and retain a trusted third party to handle your digital affairs, and instruct him on how to manage it. This is best handled by a family attorney, executor, or estate administrator.

Draw up a power of attorney

Don’t put instructions and access information into your will because that becomes a public document once it’s admitted into probate. Instead, have your estate attorney draw up a digital-assets durable power of attorney. That will legally authorize your attorney or the trusted agent you name to gain access to your accounts and devices, should you become incapacitated, incompetent, or otherwise unable to handle your own affairs. Your agent’s authority under the durable power of attorney ends when you die, but thereafter, your personal representative (executor under a will, administrator if intestate) picks up the authority to act.

Store your inventory safely

Of course, all of your access codes are the keys to your digital kingdom, so the printed inventory should be kept securely in a safe-deposit box, Beyer says. Maintain a digital version of your print inventory to note changed passwords or newly added Web services. Store that on an encrypted flash drive, and retrieve and update the paper version as often as is feasible. Destroy the old print list after the new one replaces it.

Look for user controls

Online services have not yet caught up with the digital afterlife concern. “Many have some sort of policy in their user agreement that may allow access to an executor or authorized agent upon submission of a death certificate and documentation,” Beyer says. “The industry could solve the problem by providing a screen when you open an account, asking who you authorize to have access if you become disabled or deceased.”

But Beyer expects companies to get up to speed on this in the coming years, and some have already done so. Google’s Inactive Account Manager, launched in 2013, lets you instruct the Internet giant on what to do if your account becomes inactive for any reason, including your death. You can choose to have your data deleted after three to 12 months of inactivity or authorize trusted contacts who can receive data from some or all of your Google services, including Blogger, Drive, Gmail, and YouTube.
Complete Article HERE!

March 30, 2015March 30, 2015

Videos On End-Of-Life Choices Ease Tough Conversation

By Ina Jaffe

Hawaii ranks 49th in the nation for use of home health care services during the last six months of someone's life. Videos from ACP Decisions show patients what their options are at the end of life. — Hawaii ranks 49th in the nation for use of home health care services during the last six months of someone’s life. Videos from ACP Decisions show patients what their options are at the end of life.

Lena Katakura’s father is 81. He was recently diagnosed with esophageal cancer and doctors don’t expect him to survive the illness. Katakura says a nurse at their Honolulu hospital gave them a form to fill out to indicate what kind of treatment he’d want at the end of life.

“And we’re looking through that and going, ‘Oh my, now how’re we going to do this?’ ” says Katakura. Then the nurse offered to show them a short video and Katakura and her father said “Great!”

While, the majority of Americans say they’d rather die at home, in many cases, that’s not what happens. Among people 65 years of age or more, 63 percent die in hospitals or nursing homes, federal statistics suggest, frequently receiving treatment that’s painful, invasive and ultimately ineffective. And Hawaii is one of the states where people are most likely to die in the hospital.

The video that Katakura and her father watched pulled no punches. It begins: “You’re being shown this video because you have an illness that cannot be cured.” Then, in an undramatic fashion, it shows what’s involved in CPR, explains what it’s like to be on a ventilator, and shows patients in an intensive care unit hooked up to multiple tubes. “You can see what’s really going to be done to you,” says Katakura.

And you can decide not to have it done. The video explains that you can choose life-prolonging care, limited medical care or comfort care.

The simple, short videos are being shown in medical offices, clinics and hospitals all over Hawaii now. And they’re being shown in many of the languages that Hawaiians speak: Tagalog, Samoan and Japanese, among others. Lena Katakura and her father watched the video both in English and in Japanese.

“Some patients have said, ‘Wow, nobody’s ever asked me what’s important to me before,’ ” says Dr. Rae Seitz. She’s a medical director with the non-profit Hawaii Medical Service Association (HMSA) — the state’s largest health insurer. She says there are a number of obstacles that keep patients from getting the treatment they want.

Some health care providers may talk about it, she says, some may not; and each doctor, clinic, hospital and nursing home may have different standards. But also “it takes a lot of time, and currently nobody has a good payment system for that,” says Seitz.

Out of 50 states, Hawaii ranks 49th in the use of home health care services toward the end of life. Seitz wanted to change that and she’d heard about these videos produced by Dr. Angelo Volandes of Harvard Medical School. She thought maybe they could help. So she brought Volandes to Hawaii to give a little show-and-tell for some health care providers.

“I frankly was astounded,” Seitz says, “at how excited people became when they saw these videos.”

Volandes thinks they were excited and — maybe — a little bit relieved.

“Physicians and medical students aren’t often trained to have these conversations,” says Volandes. “I, too, had difficulty having this conversation and sometimes words aren’t enough.”

Volandes is the author of a book called The Conversation. It tells the stories of some of the patients he encountered early in his career and their end of life experiences. He describes aggressive interventions performed on patients with advanced cases of cancer or dementia. In the book, they suffer one complication after another. There is never a happy ending.

But the videos are not designed to persuade patients to opt for less aggressive care, Volandes says. “I tell people the right choice is the one that you make — as long as you are fully informed of what the risks and benefits are.”

Still, studies show that the vast majority of people who see these videos usually choose comfort care — the least aggressive treatment. That’s compared to patients who just have a chat with a doctor.

Every health care provider in Hawaii currently has access to the videos, courtesy of the Hawaii Medical Service Association. The impact on patients will be studied for three years. But one thing that won’t be examined is how patients’ choices affect cost, Seitz says.

“When a person dies in hospice care at home,” she says, “it’s not as costly as dying in the ICU. But it’s also more likely to be peaceful and dignified. So people can accuse insurance companies [of pushing down costs] all they want to, but what I would look at is: Are people getting the kind of care that they want?”

Katakura’s father is. He’s at home with her, and receiving hospice services. After seeing the videos, she says, he chose comfort care only.

If she were him, she’d want that too, Katakura says. “So I was satisfied with his decision.”

Now, she says, she needs to make a decision for the kind of care she wants for herself at the end of life — while it’s still, she hopes, a long way off.

Watch A Sample Video

This excerpt from an ACP Decisions video was posted by NPR member station KPCC. You can view the full catalog on ACP Decision’s website, but they note that the videos are not meant for individual use; they’re designed to be part of a conversation between providers and patients.

Complete Article HERE!

March 29, 2015

Teenagers Face Early Death, on Their Terms

By JAN HOFFMAN

One morning a social worker stopped by her hospital room. They began a conversation that would be inconceivable to most teenagers: If death approached and AshLeigh could no longer speak, what would she want those who surrounded her to know?

The social worker showed AshLeigh a new planning guide designed to help critically ill young patients express their preferences for their final days — and afterward.

If visitors arrived when AshLeigh was asleep, did she want to be woken? If they started crying, should they step outside or talk about their feelings with her?

What about life support? Funeral details? Who should inherit her computer? Or Bandit, her dachshund?

AshLeigh grabbed her blue and hot-pink pens, and began scribbling furiously.

When she died in July, she was at home as she had requested. Per her instructions, she was laid out for the funeral in her favorite jeans, cowgirl boots and the white shirt she had gotten for Christmas. Later, the family dined, as AshLeigh had directed, on steak fajitas and corn on the cob.

“I don’t know what I would have done if I’d had to make these decisions during our extreme grief,” said her mother, Ronda McHale. “But she did it all for me. Even though she got to where she couldn’t speak, AshLeigh had her say.”

A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults. When patients are under 18 and do not have legal decision-making authority, doctors have traditionally asked anguished parents to make advanced-care choices on their behalf.

More recently, providers have begun approaching teenagers and young adults directly, giving them a voice in these difficult decisions, though parents retain legal authority for underage patients.

“Adolescents are competent enough to discuss their end-of-life preferences,” said Pamela S. Hinds, a contributor on pediatrics for “Dying in America,” a 2014 report by the nonprofit Institute of Medicine. “Studies show they prefer to be involved and have not been harmed by any such involvement.”

There are no firm estimates of the number of young patients facing life-threatening diseases at any given time. Cancer, heart disease and congenital deformities together account for an estimated 11 percent of deaths among adolescents, about 1,700 per year. And many thousands live with the uncertainty of grave illness.

“If you are one of the children for whom this matters, or one of their parents, this is a huge opportunity,” Dr. Chris Feudtner, a pediatric palliative care physician and ethicist at the Children’s Hospital of Philadelphia, said of these conversations.

But shifting from hushed talks with parents to conversations that include young patients has met some resistance. Many doctors lack training about how to raise these topics with teenagers. Until recently, most clinical teams believed that adolescents would not understand the implications of end-of-life planning and that they might be psychologically harmed by such talk.

Sometimes when providers do make the attempt, parents or patients may abruptly change the subject, fearful that by joining in, they are signaling that they have abandoned hope.

Yet research shows that avoiding these talks exacerbates the teenage patient’s fear and sense of isolation. In a 2012 survey examining end-of-life attitudes among adolescent patients with H.I.V., 56 percent said that not being able to discuss their preferences was “a fate worse than death.” In a 2013 study, adolescents and parents described such directed family talks as emotionally healing.

Teenage patients can guide, even lead, their medical care, Dr. Feudtner said. But more important, including them in the discussions acknowledges a terrible fact that patient and family members struggle to keep from each other: the likelihood of death.

“Then people can be together, as opposed to alone,” Dr. Feudtner said. The teenage patient feels free to address intimate topics, including “the scariest aspects of the human condition — mortality and pain — but also love, friendship and connection.”

Creating a Legacy

Karly Koch, a college student from Muncie, Ind., has been treated for many serious illnesses, including Stage 4 lymphoma, all related to a rare genetic immune disorder. Her older sister, Kelsey, died of the condition at 22.

Last spring, Karly, then 19, developed congestive heart failure. Her renal arteries were 90 percent blocked. As Karly lay in intensive care at the National Institutes of Health, a psychotherapist who had worked with the family for years approached her mother, Tammy, with the new planning guide.

“Do we talk about dying?” Mrs. Koch recalled wondering. “Maybe Karly hasn’t thought about it — do we put it in her head?”

“We had already buried a child and had to guess what she wanted,” she continued. “So we wanted Karly to have a voice.”

Karly’s reaction? “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.

The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.” While there are end-of-life workbooks for young children and their parents, as well as planning guides for older adults, this is the first guide created for — and largely by — adolescent and young adult patients.

The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a social worker and principal investigator on the research that led to the planning guide.

In the two years since its introduction, more than 20,000 copies have been ordered by families and more than 70 medical centers from Aging With Dignity, the nonprofit that publishes it. “Voicing My Choices” has also been translated into Spanish, Italian, French and Slovak.

In straightforward language, the guide offers young patients check boxes for medical decisions like pain management. Another section asks about comfort. Favorite foods? Music? When visitors arrive, one option could be: “Please dress me, comb my hair and do whatever else is needed to help make me look like myself.”

What gives you strength or joy, the guide asks. What do you wish to be forgiven for? And who do you wish to forgive?

“These are the things that are important to know about me,” one list begins. AshLeigh, who would dance and sing down the aisles of Walmart, wrote: “Fun-loving, courageous, smart, pretty wild and crazy.”

Devastating disease can leave anyone feeling powerless, so a means to assert some control can be therapeutic. For adolescents, who are exploring and defining identity, Dr. Feudtner said, “you can express who you are, what you are and what you care about.”

By offering young patients opportunities to write farewell letters, donate their bodies to research and create rituals for remembering them, the planning guide allays one of their greatest fears: that they are too young to leave a meaningful legacy.

And so the ability to do it can galvanize them. Lauren Weller Sidorowicz received a diagnosis of metastatic bone cancer at age 18. Determined and outspoken, she joined a focus group of young patients at the N.I.H. whose opinions led to the creation of the planning guide. Days before she died in 2011 at age 26, Ms. Sidorowicz paged Dr. Wiener, frantic to include a final thought in a farewell letter.

To her grandmother, she wrote, “I hope there is potato salad in Heaven as good as yours.”

There are no standards for when and how to introduce a critically ill teenager to end-of-life planning; there are only intuition and experience. Many pediatric cancers have favorable prognoses, Dr. Feudtner said, and raising the topic prematurely may provoke anxiety and fear.

More often, though, doctors postpone the discussion too long, until the patient is too sick to take part. Dr. Maryland Pao, a psychiatrist at the National Institute of Mental Health who helped design the guide, recalled the despair of a mother whose dying son could no longer speak.

“I have no idea what he wants,” the woman told her. “He’s 17, but we never communicated about this.”

Dr. Wiener believes preparation should be done soon after diagnosis, but when the patient is stable. Exploratory talks, she said, become steppingstones, each readying the patient for the next one.

Still, providers encounter problems. “If the family doesn’t want to do it, you’re stuck,” Dr. Pao said. “There’s a lot of magical thinking — that if you talk about it, you’ll help them die.”

And sometimes teenagers themselves put up obstacles to having frank family discussions. Some young patients, for example, did not want Dr. Pao to tell their parents that they were ready to stop treatment. Rather than say as much to their heartbroken relatives, some will pour out their feelings on social media.

Erin Boyle, 25, had been treated for autoimmune disorders since she was 4. Last August, as she prepared for a stem cell transplant for leukemia, N.I.H. researchers asked whether she felt comfortable looking through “Voicing My Choices.”

Ms. Boyle completed most of the guide. At that time, she recalled, “the decisions felt theoretical rather than imminent.”

But shortly after the transplant, she relapsed.

“It was comforting to get my wishes down on paper and free myself to live without worrying about the details of dying,” she said recently.

She died on Wednesday. Her body is going to the N.I.H. for a research autopsy, as she wished, her mother, Ellen, said.

For doctors, end-of-life discussions with adolescent patients can be wrenching. “You have to be self-aware and reflect on your own experiences with grief and loss,” Dr. Pao said. “It’s hard not to be anxious if you have children. You feel helpless. It makes you face your own mortality.”

On July 25, Karly Koch had an experimental bone marrow transplant. Her family calls that date her “re-birthday.” With 12 medications a day and a surgical mask, she is out and about in Muncie.

Karly takes classes to become a physical therapy assistant. She is a youth leader at her church, where her boyfriend is also a member. She delights in “normal people” activities.

Her parents keep Karly’s copy of “Voicing My Choices” in their bedroom cabinet. “It isn’t gloomy to go through,” Karly said. “It’s kind of fun to get your feelings out there.”

“Now, looking at it,” she continued, “I think I’d like to add some things.”

Complete Article HERE!

March 12, 2015

LA’s Korean “Well-Dying” Program Counters End-of-Life Planning Taboo

By Nicole Chang

LOS ANGELES–Last June, terminal brain- cancer patient Brittany Maynard, age 29, ended her life after moving from California to Portland, Ore., to take advantage of that state’s “death with dignity” law allowing for physician-assisted suicide in restricted cases.

Given six months to live, Maynard announced her wish to end her life in a YouTube video that placed her in the national spotlight. In Oregon, after terminally ill patients have their assisted suicide request approved by two physicians, they can choose to take a fatal prescription provided by a doctor.

Unlike Maynard, most people face the end of their lives in old age. Although very few people at any age wish for doctor-assisted suicide, everyone hopes t0 die with dignity in the 21st century, when modern science promised to extend average live expectance to 100 years–but can also prolong death artificially.

“James,” who asked not to be identified, recently spoke to a group of reporters at the at the Cedars Sinai Medical Center’s Supportive-Care Medicine Program in West Los Angeles. The program provides palliative and hospice care to very sick or terminally ill patients.

The program helped James to spend his time with his wife, a terminal cancer patient, and prepare for her death, especially during her last 10 days. He recalled, “My wife used to say often that she wanted to pass away peacefully. Now I am satisfied that she did so, having spent the remaining time with her loving ones like family, friends and relatives.”

When his wife’s breast cancer spread to her brain, she chose to enter the hospital’s hospice program, rather than begin painful and difficult chemotherapy, which offered little help in her case.

Shedding a tear, James said, “All my wife got was just medication to reduce her pain, and she had a peaceful period before death.”

Koreans Choosing Hospice Increasing

Koreans who choose the hospice services are increasing gradually. John Kim, who was given three-to-six months to live due to stomach cancer, also chose hospice services instead of chemotherapy. Hospice staff visited his apartment every other day to control his pain and nutritional status.

Kim said, “At first, to live even a little bit longer, I considered medical treatment, but then I realized that I do not want to waste my time getting chemotherapy that would not make me live longer.” Instead of being weakened by the chemotherapy, he said, “I would like to finish what I have to do before death, being with my children and friends.”

Kim’s oldest daughter, 44-year-old “Karen,” (not her real name) said, “ I didn’t agree with my father’s decision, but now I get comfort when I see his relaxed face.”

Karl Steinberg, MD, Chief Medical Officer, Shea Family Health in San Diego, explained, “People tend to regard hospice as a place you visit before you die, but actually, you can get the hospice care either at home or a hospital.”

Steinberg continued, “While in hospitals, doctors put a priority on getting rid of cancer and then pain; hospice staffs do the opposite. Experts prescribe differently according to the person and his symptom to abbreviate the pain. They help patients keep their dignity until the last moment before facing death.”

The Somang (Hope) Society

Koreans in Los Angeles are changing perceptions of hospice care partly because of the “well-dying” campaign of the Somang (Hope) Society, which was founded in 2007. The nonprofit’s president, Boonja Yoo, started the “well-being” movement to inform older adults how to live well, and the campaign evolved into the “well-aging,” to help people better prepare for life after retirement. Eventually, the group also launched the “well-dying” campaign inform older people how to prepare for death.

“Personally,” Yoo revealed, “as my husband and brothers passed away, I realized the more you prepared for death, the more beautifully you can finish your life.”

Yoo, who been awarded the South Korean government’s National Magnolia Medal for her international efforts in drilling water wells in remote areas and early childhood education, decided to develop the well-dying campaign based on her 20-year career as a nurse. She saw many patients at the end of their lives, as well as their family members, while she worked at a hospital, caring for burn patients, and at a nursing home.

She explained that the well-dying program is assisting Korean seniors to develop living wills, in which people can make legacy statements about their life lessons and values; their funeral preferences; possible organ donation; and advance health care directives, instructing other about their treatment near death, in case a coma, dementia or other problem prevents them from stating their wishes.

Advance-care planning is not only for patients, but also for their family. The number of living-will testaments and advance directives written so far is about 9,300. Also, 750 people have volunteered to be organ donors when they die. And 28 who died actually had their organs save the lives of others.

Unfortunately, Yoo said, Koreans are deterred from planning by their “taboo culture of death.” For example, she went on, “There are many people who die too painfully at the hospital because they didn’t really know much about the hospice service that can helps die without pain.”

Yoo explained, “People should not prepare for death by themselves, but plan with their family, as well.” Even though death is never an easy subject, she said, “I still expect that more Korean people could finish their life beautifully, as if they prepared for trip.
Complete Article HERE!