Martin Bayne entered an assisted living facility at 53 after he was diagnosed with young-onset Parkinson’s disease. The disease affected his nerves so severely, it was impossible for him to take a shower and get dressed by himself.

“When I was in my 40s, I was physically fit and very active,” Bayne tells Fresh Air’s Terry Gross. “And to have to give all that up and stay in a wheelchair now and be helped by so many people to do the simplest of things — it takes a little getting used to.”

That was 10 years ago. Bayne has gotten used to getting help in the assisted living facility in Pennsylvania’s Lehigh Valley. He says it allows him to manage his illness and maintain a good quality of life.

But Bayne is unlike most residents in assisted living facilities. They’re often in their 80s and 90s, and move in typically after a traumatic event, Bayne says.

“They just lost a spouse, they have some terrible disease, or they’re in a stage of dementia where they can’t live by themselves,” he says. “And it can be frightening for people at that age to come in and all of a sudden have to deal with all this foreign, new stuff.”

Bayne calls himself an observer-advocate and writes about long-term care reform for the elderly. He has covered the operational issues of some assisted living facilities, including wheelchair inaccessibility and what he described in Health Affairs and later the The Washington Post as “a top-down management team whose initial goal seems to be to strip us of our autonomy.”

In that article, Bayne noted that the real problem residents face in assisted living facilities is coping emotionally.

“Most residents show a calm, even peaceful veneer,” he wrote. “But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in assisted living. It’s the result of years of loneliness and isolation.”

Bayne tells Gross that he makes it a point to introduce himself to new residents in the facility and even conducts video interviews with some of them.

“I love the community I’m in; it is my home,” he says. “And the people there — no matter how demented or how sick or whatever wrong with them — I feel that [it's] my responsibility to make their journey while still on this planet as joyous and fulfilling as possible.”

A former journalist and Zen monk, Bayne now publishes a literary journal called The Feathered Flounder, featuring writers in their 60s and older.

Interview Highlights

On false advertising

“The truth is, in the facility I am in, the administration [is] by and large wonderful people — wonderful people — but in many facilities they are not, and they have a top-down management system, which starts obviously with the owners, or stockholders, whichever the case may be, and they try and make you as compliant as possible, as quickly as possible. They don’t need any revolutions. They want to put on a good face for the public. I was driving with someone else about a mile away from where I live and I saw an ad, a large ad, for my facility and there was a couple dancing [in it]. And I said to myself, ‘If I stood outside my room for five years, I would never see a couple dancing in my facility.’ ”

On societal perceptions of the elderly

“We as a society have begun to think of what our elders are capable of as merely pinochle and dancing and bingo — and that’s such a waste of humanity. It really is. I mean, that’s sadder in my opinion than cases of neglect that you see in facilities. To see someone who is, or was, a doctorate — had a doctorate — or was a high-level professional or was just good at what they did, could have been a cabinetmaker, and then to see them lose that edge, to see them stop and become what I call elder zombies. It’s very sad, very sad.”

On recording people’s final days

“I try and get people on video as soon as possible because you never know how long they’re going to be here, and video has never let me down. It’s wonderful. I just set my camera up on a tripod, I invite people in to sit with me and talk for half an hour about anything that’s on their mind. …

“It’s almost like the most intimate form of communication that I can think of, and it allows me to sit there with a person, and for a few moments we just let our guards down. …

“I find that people that I’ve never talked before in that way all of a sudden open, and your life spills out in front of me and I’m moved often to tears myself. One of the first things I do when someone’s died is show the video to their children. I still keep them, but I always show it to the family if I do have a video of the deceased.”

On how death is handled in assisted living facilities

“This is a factor of which facility you’re in, but I would say it’s fair to say that on the whole, death is handled very poorly, very badly. And I think that setting up a time and a place to honor the person who’s just died not only completes their life but, in a way, brings a sense of joy and release into your life, and it gives you a sense — I think for everyone — that life is purposeful and that we have to acknowledge [death], not hide [it] under the rug. Death is also an integral part of who we are as human beings, and I think to talk about it openly, while in a way celebrating the lives of the deceased, I think is very helpful.”

Physicians Form Advisory Council to Take the Lead

HONOLULU – Leading Hawai’i physicians today announced formation of the Physician Advisory Council for Aid in Dying (PACAID) and released survey results showing overwhelming support by Hawai’i doctors to incorporate the practice into end-of-life care. A January survey by QMark Research of Hawai’i found 76% of doctors agree people in the final stages of a terminal disease should have the right and the choice to bring about their peaceful death.

The PACAID members will adopt best-practice guidelines for aid in dying, advocate supportive policies at medical organizations, and consult with patients and their physicians. They will provide peace of mind to terminally ill, mentally competent adults by prescribing life-ending medication that patients may self-administer if suffering becomes unbearable.

Charles F. Miller, MD, FACP; Robert “Nate” Nathanson, MD; and the late Max Botticelli, MD, founded PACAID with the primary goal of helping physicians empower their terminally ill patients. By having personal control of their end-of-life options patients have the ability to achieve peace of mind, reduce suffering and have a higher level of satisfaction at the end of life. Clifton S. Otto, MD, and John Samuel Spangler, MD, joined PACAID, bringing the core group of physicians to five before Dr Botticelli’s untimely death.

The physician-members of PACAID will develop, lead and support a larger Physician Coalition for Aid in Dying, a network of supportive physicians. “Nearly nine in ten doctors agree the medical community – not government – should establish practice guidelines to prevent abuse,” said Hawai’i pollster Barbara Ankersmit, president of QMark Research. Fifty-seven percent of doctors agreed specifically they favor allowing their terminally ill patients the choice to request and receive aid in dying.

“Aid in dying will be gradually implemented and incorporated in end-of-life care in Hawai’i,” said Dr. Miller. “Dying patients will talk to their doctors, doctors will respond, hospice will work well with information we have provided, and aid in dying will be available along with, not instead of, hospice care.”

PACAID members will provide information, guidance and emotional support to hospice workers in cooperation with Compassion & Choices Hawai’i End-of-Life Consultation (EOLC) program. EOLC uses the power of choice and comfort to restore hope to individuals and their loved ones at the end of life. Individuals seeking information about end-of-life decisions can access Compassion & Choices Hawai’i’s End-of-Life Consultation service by calling 1-800-247-7421.

“Most medical care is governed by professional scope of practice standards,” said Dr. Nathanson, a founder of Hospice Hawai’i. “Medical practice standards routinely govern other practices that may advance the time of death, such as withdrawal of life-sustaining treatment, voluntarily stopping eating and drinking, and palliative sedation.”

In addition to leading the development of practice standards and building the coalition of supportive physicians, PACAID will advise physicians who receive aid-in-dying requests from patients and shepherd affirmative policy through local medical organizations. Members of PACAID with current licenses and prescribing privileges for controlled substances can serve a consulting role to patients and their doctors, and write a prescription for life-ending medication if the primary physician declines to do so for personal or moral reasons.

Last October, experts on Hawai’i law, medicine, elder care and policy-making for end-of-life issues concluded Hawai’i physicians may provide aid in dying, subject to professional best-practice standards. Based on the experience of professionals in other states, the physicians of PACAID aim to lend their expertise and leadership in developing those standards. Dr. Miller served for 30 years in the U.S. Army Medical Department, was chief consultant to the Surgeon General and spent nine years as chief of hematology-oncology at Kaiser Medical Center, Honolulu. Dr. Nathanson co-founded Hospice Hawai’i in 1979 and served in general practice for 37 years. Dr. Botticelli, one of the founders of PACAID before his unexpected death earlier this month, joined the University of Hawaii’s John A. Burns School of Medicine in 1971 and became chair of the Department of Internal Medicine in 1992. He also served as director, from 1986 to 1994, of the Queen Emma Clinic, operated by The Queen’s Medical Center in collaboration with the College of Health Sciences of the University of Hawai’i.

To interview Dr. Miller or Dr. Nathanson, please contact Steve Hopcraft or Scott Foster at the below phone or e-mail.

Scott Foster, 808/988-0555; fosters005@Hawaii.rr.com;
Steve Hopcraft, 916/457-5546; steve@hopcraft.com

Physician Advisory Council for Aid in Dying • 111 Hekili Street, Suite A410 • Kailua, HI 96734 • p 800.247.7421

]]> http://www.compassionandchoices.org/2012/04/03/3-of-4-hawaii-doctors-want-aid-in-dying-as-a-medical-practice/feed/ 0 http://www.compassionandchoices.org/2010/12/13/good-bye-elizabeth-edwards-thank-you-for-lighting-the-way/ http://www.compassionandchoices.org/2010/12/13/good-bye-elizabeth-edwards-thank-you-for-lighting-the-way/#comments Mon, 13 Dec 2010 21:38:04 +0000 Barbara http://blog.compassionandchoices.org/?p=1177 ... more]]> Still recovering from last week’s distressing Frontline revelations of how life ends for cancer patients in the intensive care units of New York, I feel enormous gratitude to Elizabeth Edwards for showing us how to meet an imminent death with grace, courage and wisdom.

What a contrast between the sense of darkness, denial and disaster embedded in those hospital patients and their families, and the vivid celebration of life and love that surrounded Edwards as she died among loved ones, in her own home. What a gift to see her carefully take her leave, imprinting memories on friends and children to inspire and guide them their whole lives.

While there was a fight to win, Mrs. Edwards fought hard. But unlike the dying patients in the Frontline piece, medical science served her needs, not the other way around. While the Frontline doctors asserted that long-shot, dangerously intense treatments are to be endured as what “drives medicine forward,” Edwards’ physicians candidly advised her further treatment would be “unproductive.”

Thus, medical science released her to her own best judgment. Elizabeth Edwards possessed the intellect, stature and courage to negotiate that release. The choice of dying in peace and comfort should not be the exclusive domain of those with money, power and negotiation skills. Hospice, the great idea almost entirely absent from the Frontline piece, should be the treatment of choice for everyone in the situation Edwards faced.

CNN noted this well. They quoted Dr. David Casarett, of the University of Pennsylvania. “People in hospice don’t want to die. They want to live, and they want to live well,” he said. “They want to use whatever time they have to live the best way they can. I don’t think it’s giving up. It’s making a careful choice. The easiest thing is to go after treatment after treatment, and say yes to whatever gets offered next,” Casarett added. “The bravest thing is asking yourself what’s important, who’s important, what’s best for you and your family and choosing hospice that way.

Elizabeth Edwards did all that in spades. She understood Dr. Casarett’s words, their wisdom and their promise of hope: “Throughout my life, both personally and professionally, I have had the opportunity to see how people have been affected by illness and loss and the role the healthcare system may have played as they dealt with change in their lives. I also know that people can find a great deal of hope even in the most challenging of life’s situations. Hospice and palliative care professionals support and care for people at a time when hope can be hard to find.”‘

When hope of conquering cancer becomes vanishingly small, another hope arises. This is the hope of dying well, dying gently and in comfort and peace with loved ones close. Elizabeth Edwards hoped for that and achieved a great success in making it happen. May her lesson help light the way and heal our broken manner of dying in America.

The powerful Catholic Health Association says Compassion & Choices and I are exaggerating; the change is insignificant.

To bolster its claim of “no change” CHA points to another Directive, Number 59, that the free and informed judgment of patients should always be respected. What CHA fails to note is the condition at the end of that sentence, “unless contrary to Catholic moral teaching.”

But, one might ask, what exactly does that mean? How broad is that caveat? Who decides – doctor, bioethicist, Bishop? What sort of request, expressed in a living will, may not be honored in a Catholic hospital or nursing home, even before the recent change in ERD 58?

Picture this situation:

My mom received an Alzheimer’s diagnosis when she was just 59, and we both had a pretty good idea what lay ahead. Not far from my home northwest of Chicago is a fine long-term care facility with a wing dedicated to patients with Alzheimer’s.

My mom has been there ten years. She has been well cared for, getting the day-to-day support I couldn’t give on my own. Even as I have watched and grieved her drifting away, I am grateful for the time we have had together over those ten years.

Then she lost her appetite and her ability to feed herself. It’s hard for her even to swallow. Two days ago her care coordinator asked me about a feeding tube. I knew what Mom would choose. My family was supportive. I told the care coordinator Mom wouldn’t want a feeding tube in this condition and I took another little step down that slow path of grief.

But the care coordinator wants me to meet with their chaplain before making a decision. She says my mom is not actively dying and there’s no indication that she wouldn’t tolerate a feeding tube. Will I have to find another facility and arrange a transfer to honor what I know would be my mother’s wishes?

The recent change to the ERD sets out some narrow exceptions when artificial nutrition and hydration (ANH) is not obligatory: if a patient is actively dying; if the tube causes serious side effects like infection; if the patient’s body cannot assimilate the food and water.

But, “My loved one doesn’t want to eat and can’t swallow. I don’t want to force them to stay alive.”— will that justify an exception?
Here’s another scenario:

The phone rings. It’s the assisted living facility’s care supervisor; my father collapsed just after dinner. “The EMTs are taking him to Mercy Hospital.” An hour later I am driving down Baltimore Pike into southwest Philadelphia.

I find my father in the ICU. Hooked up to all the tubes and equipment he looks so much older than a week ago. Over the next day and a half of tests and waiting – learning it’s a stroke – he doesn’t wake or stir. I’m sitting with him mid-morning when the neurologist arrives. He goes over results and treatments they’ve tried. “It’s unlikely that your father will regain consciousness, and if he did, very unlikely that he would return to normal mental function. We need to think about next steps.”

My father designated me his health care proxy for a moment like this. His advance directive is clear, and he’s been blunt in conversation. “Look, I’m eighty-three years old, and I’ve had all the breaks. If something happens, I don’t want to sit in a chair and drool for years.”

I make an appointment to see the social worker in her office, where we’re joined by a priest. I tell them we’re ready to remove life support. She turns to the priest. He says, “Mercy Hospital is committed to honoring advance directives for health care decisions as long as they do not contradict Catholic principles,” The priest has a copy of my father’s advance directive and reads from it. “If I am ever consistently and permanently unable to communicate, swallow food and water safely, care for myself and recognize my family and other people, and it is very unlikely that my condition will substantially improve, I would want to die rather than have life-sustaining treatments.”

The priest looks up. “Your father’s living will suggests that in his unconscious state his life is no longer worth living. Under these conditions, removing life support would be an act of euthanasia by omission.”

Catholic bioethical thought has evolved over centuries. The ERDs that govern care in Catholic hospitals and nursing homes are extremely nuanced. Your directions about life support may or may not be honored in a Catholic institution. Your concern about the burdens of medical interventions might justify forgoing life-sustaining medical treatment. But a wish to be allowed to die under certain circumstances might not.

Have you talked with your family about end-of-life options? Good.

Is an advance directive in place? Excellent!

Will that directive be honored in a Catholic health care facility? We cannot know for sure.

When I met Ruth in 1996, she was already an icon in the movement for freedom of choice at the end-of-life. She had a long list of accomplishments behind her. But she was not happy. At that time, only Oregon had succeeded in affirmatively legalizing aid in dying, and its Death With Dignity law languished in legal limbo. Ruth was determined to make a difference and joined the work of Compassion & Choices, serving as a dedicated ambassador of end-of-life choice.

Among the things I treasure from my 15-year friendship with Ruth is having had the opportunity to see her growing pleasure with advances we’ve achieved in end-of-life choice. Together Ruth and I witnessed the triumph of justice over repeated legal challenges to Oregon’s law, the passage and implementation of Death With Dignity in Washington, the passage in California of the Terminally Ill Patients’ Right to Know End-of-Life Options Act and a ruling by the Montana Supreme Court to recognize and affirm physician aid in dying.

Ruth was a generous, fierce and dedicated supporter of our movement, as she was for reproductive choice. Her passion for human liberty was not limited to one issue, but spanned from the cradle to the grave. Gloria Steinem summed that up beautifully in a letter she wrote when Compassion & Choices honored Ruth on her 100^th birthday.

When I was in South Africa a few years ago, I went to see a wise woman known as the Queen of the Lovedu, a tribal group of about 300,000 that had settled in a remote rural area after a long migratory past.

She was one of the most respected tribal leaders in the country, partly because she, unlike many, had not been put in place by the apartheid government or even by heredity. She was one of a long line of wise leaders who had been chosen communally as a young woman, and then trained for many years by her predecessor until she, too, was ready to become a source of guidance and continuity.

When I came to the remote area and her village, I noticed that all the earthen, thatched-roof structures were as round and smooth as sculptures. So were the central area and the places where livestock were kept.

I entered into a smaller round structure at a little distance from the rest, and was welcomed by a calm woman who seemed to be in her late fifties. She was seated in a large armchair facing me and the two translators who brought us together across three languages.

I learned that she had two paramount duties: keeping the peace and making rain. She was about to begin instructing the young woman who would eventually succeed her-a long course of learning stories that contained their history and customs, ways of governance and healing.

In response to my questions, she said she had heard there was violence against women in other places, but she had not personally witnessed it here. Traditionally, women had understood how to control their own fertility with herbs and abortifacients-how to have children well spaced and no more than they wished-but this knowledge was called sinful by some Europeans and by the church.

Among other rights of the past had been the right to decide when to die. For example, after her duty of transferring her knowledge to the next wise woman was complete, it was up to her to decide when she was ready to leave this life.

At least it had been-until scandalized missionaries punished and put an end to the practice. Only a male god could decide life and death.

I finally realized the obvious: those who take away the power to decide birth also take away the power to decide death. The first one is unique to women; the second is the right of us all. In our country, is it not odd that those who support capital punishment also tend to oppose abortion and birth control. The question is not life or death but who has power over life and death.

Ruth, you knew this long ago-and you set out to empower us all. Your work also restores balance between women and men, between people and nature.

I thank you for being the wise woman of Manhattan.

- Gloria Steinem
from Compassion & Choices Magazine, Spring 2008

Ruth manifested deeply held personal beliefs throughout her life, and she wanted her death to be the same. She gave her family a detailed, written plan of her wishes should she become incapacitated, including guidance on whether and when to call an ambulance and the disposition of her body after death. She discussed her plan with her family and doctors, obtaining their assurance that her wishes were known, and that they would be honored. Her proactive approach gave her children the security of knowing, without question, what was right for Ruth when the time came.

Last night, Ruth died peacefully, as and when she had hoped. Family members at her side remained in touch with a Compassion & Choices counselor throughout Ruth’s dying process. Ruth spent the last chapter of life in her home, in the company of her children, her grandchildren and her great grandchildren.

Ruth’s careful plans and clear communication made it possible to experience a death that honored the life she led. Her courage, advocacy and unfailing support for human liberty will enable millions who follow her to achieve the life, and the death, they choose.