End-of-Life Choice, Palliative Care and Counseling

Posts TaggedConversation

Teens Want Voice in End-of-Life Decisions

By Serena Gordon
U.S. News & World Report
October 9, 2012

Teens and young adults who are seriously ill should have a chance to be involved in end-of-life decisions, and a new planning guide — developed especially for this age group — can help, researchers say.

“It’s OK to raise these issues and open up communication,” said Lori Wiener, director of the pediatric psychosocial support and research program at the U.S. National Cancer Institute and lead author of a study that helped develop the new guide.

“Adolescents and young adults often stay silent and secret because they don’t want to share their fears — because they don’t want to upset their parents. And parents don’t bring up end-of-life issues for the same reasons,” she explained. More

My Mother, Pat Manning

My mother, Pat Manning, lived a charmed life.

When she was 16, she became the first-ever Queen of the Cody, Wyoming, Stampede Rodeo. That’s her on the right in front.

She sat in the owner’s box when Secretariat won the Kentucky Derby, met more than one president of the United States and traveled the world. She even walked away from a single-engine plane crash. Mom loved her family, antiques, and the joy and laughter of the many guests she entertained at home.

But when she was 79, she began to dwindle. No “big” diagnosis; an infection here, another illness there. Many trips to the hospital often led to days in intensive care. For three years, she kept returning home, where my sisters and brother and I were able to care for her and keep her relatively comfortable. But she was tired and often in pain. And her strong mind mourned how weak her body had become.

She was very clear with us: She did not want to live that way. As she put it, she was sick and tired of being sick and tired.

At 82, she made her final trip to the hospital. The doctors explained the situation to my sisters and brother and me: They said there was the possibility of surgery with a slim chance of benefit and a lot of drawbacks. The four of us siblings had spent a lifetime disagreeing. At any given time we could differ about anything, including the color of the sky. But my mother had told us what she wanted so clearly that we were able to speak about this in one voice to support her decision because we knew she didn’t want to live this way. There was no hand-wringing, no second-guessing.

She died very peacefully four days later surrounded by family. Her room was filled with friends until hours before her death.

I am still grateful today for the gift my mother gave me. She told us exactly what she wanted, and in return we were able make sure she died peacefully.

I didn’t realize how important — and rare — that gift really was until two years later when I came to work for Compassion & Choices. I am deeply grateful to be here, to help others give their children the same gift and to help their children return the gift by honoring their parents’ end-of-life wishes.

On Mother’s Day, I encourage you to think about the kind of gift you can give a loved one. Tell them clearly how you would want to be treated in a variety of situations, what you would prioritize if you were living with physical pain, disability, terminal illness, dementia or debilitating chronic illness. Choose a healthcare proxy and make sure they understand and support your priorities. You’ll need that person not only if you can’t speak for yourself, but to support your decisions in a crisis.

And urge the mothers in your life to answer these questions as well. Ask who they would want to make choices if they no longer could.

Here’s another photo, of Pat and Jack Manning with their first great grandchild.

This Sunday I will be thinking of my mother, everything she did for us, and particularly of her clarity in telling us how she wanted to finish her life. In honor of my mother, for Mother’s Day, I’ve made a gift to Compassion & Choices. If you’d like to do the same, click here.

To her memory, and to every mother reading this, I send my best wishes for a very happy Mother’s Day. Thank you so much for all you have given.

– Jane Sanders

Who Failed the American People?

The federal government once again has decided not to help seniors with advance care planning. On Wednesday, the Obama administration announced it is dropping a Medicare provision reimbursing doctors for talking with their patients about end-of-life planning. People have been calling for the reimbursement policy for years – not only advocates of better care and choice at the end of life, like Compassion & Choices – but hospice workers, geriatricians, palliative care experts, public health in end-of-life planning and politicians of both major parties.

Every respected authority recognizes incentives for doctors to learn their patients’ preferences make it more likely patients will get the care they want. Most important, seniors who are ready to plan seriously for how they hope to spend their final days want this provision. Family members who might otherwise find themselves making unguided decisions for loved ones unable to speak for themselves would also benefit

Why then did the administration drop the provision, just days after it took effect? The explanation was that the process of publishing the regulation was not by the book, but certainly politics played a part. This common-sense measure has been the center of controversy for over a year and a half. The whole spectacle highlights how our political process can fail miserably to promote the public good.

Experts, advocates, seniors and families are understandably disappointed. We may all wonder where to direct our frustration and place responsibility. Should we blame opponents of health insurance reform, who cynically distorted the facts about advance planning conversations to stoke fear? Is the media responsible, for endlessly repeating the sensational claims about “death panels” – even now – long after they are proven false? Should we deplore that politicians’ own efforts to avoid the subject of death and deter conversations about the provision, ironically ignited more controversy and accusations of stealthy tactics? What are we to do when our leaders in government appear to back down to bullies?

I believe it is better to direct our energy toward solutions: solutions that we, individually and collectively, can bring about outside the political process. A change in Medicare policy is still a worthy goal, but we cannot patiently wait for our broken politics to mend. The result would be too many dying in circumstances of unnecessary torture; too many families struggling to make decisions in crisis.

Medicare beneficiaries can still have a conversation with their doctors about advance care planning. In fact every American – or at least those who anticipate that some day they may die – should have this conversation. The point of an advance directive, after all, is to prepare for difficult circumstances that could precede our deaths.

If you become unable to make or communicate health care decisions, having talked with your doctor and your loved ones, appointed a representative and prepared a written record of your wishes will be invaluable. If the process seems daunting, visit our Good to Go page. You can find help and ideas in our Good to Go Resource Guide and get everything you need free in our Good to Go Toolkit.

When the political fails, the personal can still succeed. You can make it happen. Initiate the conversation. Protect your family from a potential struggle over decisions about life-sustaining treatment.

For more information about end-of-life planning, visit Compassion & Choices’ Good to Go page.

New Medicare Regulations Empower Patients

New Medicare regulations to take effect January 1 will include a provision physicians, social workers and families pushed for. The New York Times reports:

Under the new policy, outlined in a Medicare regulation, the government will pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.

In truth, the consultation is not about forgoing treatment, as advance directives are equally suited to requesting life-sustaining treatment. Thus, this Medicare enhancement simply encourages communication, promotes choice, compensates doctors for important care and empowers patients.

The AP explains:

The provision allows Medicare to pay for voluntary counseling to help beneficiaries deal with the complex and painful decisions families face when a loved one is approaching death.

Experts on advance directives have stressed the importance of discussing end-of-life options before patients and families become vulnerable in a crisis. The Washington Post last year hosted an online discussion with executives from Gundersen Lutheran Hospital of LaCross, Wis., to discuss end-of-life care. A pioneer in the field, Gundersen has urged this Medicare compensation for physicians who consult with patients on end-of-life planning.

With a chance to plan with their personal physician, some patients might decide, if they become terminally ill or permanently unconscious, they’ll want a peaceful death with as little intervention as possible. Others will decide to utilize every kind of life-sustaining therapy as long as medically possible. The conversation protects either decision. These conversations empower patients and make sure that their wishes are heard.

With the new regulations, Medicare will now compensate physicians for that consultation. Why is reimbursement important? When physicians are asked why they do not regularly engage in advance care planning with their patients, they report that they do not have the time for such conversations.

As Muriel Gillick wrote last year in the Boston Globe,

Survey after survey indicates that most patients want to have end-of-life discussions but most do not have them.

Most people believe individuals themselves are the best decision-makers when it comes to these very personal, private healthcare choices. In November, 2005, the Pew Research Center found a whopping 84% of Americans approve of letting patients themselves decide about extraordinary treatments to prolong life.

Re-enforcing your decision by discussing it with your doctor makes it more likely your wishes will prevail. Solid research shows that people who talk with their doctor about end-of-life wishes are more likely to have those wishes honored, and more likely to experience a peaceful, pain-free death when the time comes.

Even patients with a living will benefit from consulting with their personal physician. Laws vary from state to state. Having specific documents in order may be necessary to make sure your wishes are carried out and that the loved one you choose is empowered to act on your behalf.

As Kristina Chew writes at Care2:

But without any end-of-life planning, patients are left to the mercy of others [when they cannot] speak up for themselves. They have no control at all about what happens to them, with health care decisions left to whoever has power of attorney.

When seniors tell their doctor what treatments they would want or not want in a given situation, they protect their families from struggles over decisions about life-sustaining treatment if they became unable to speak for themselves.

This improvement to Medicare is a long-awaited response to those families who didn’t know their loved ones’ preferences when confronted with difficult decisions in an emergency. With the coming of the New Year, Medicare will begin empowering seniors to consider the care that is right for them when they face the end of life, and better ensure their wishes control the care they receive.

Death of Ruth Proskauer Smith Honors the Life She Led

Ruth Proskauer Smith, a friend and an activist for individual autonomy, died last night, closing her life in the manner she had wished for, planned for and devoted her life to securing as her right.

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 100th 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.