End-of-Life Choice, Palliative Care and Counseling

Posts TaggedR2K

Hospice care is short relief for Sparky Anderson

Sparky Anderson died yesterday. The baseball world is mourning the loss of one of its greatest managers, most colorful characters and a beloved mentor to talented young players.

I was struck by the news that Sparky died, of complications from dementia, just one day after entering hospice care at his home in Thousand Oaks, California. The details of his illness and death are private. We don’t know the circumstances. But too often, people with a terminal illness enroll in hospice care long after they would have benefited from its focus on living the fullest possible life when time is short.

A manager makes constant choices: Which players will he put on the field and who will rest? Should his team sacrifice for one quick run or play for a big inning? Can this pitcher get the team out of a jam, or has he got nothing left to offer today? A manager can’t make those decisions without information. He relies on his coaches to help understand his own players and scouts to know the opposition.

Too often, a lack of information denies patients the ability to make informed end-of-life decisions. A recent study concluded, “Many patients whose health status and treatment preferences suggest that they might benefit from hospice are not having a discussion with their clinicians about hospice as a treatment option.”

Empowering patients to make informed end-of-life decisions is a physician’s ethical obligation, and in California, it is a legal requirement. The California Terminally Ill Patient’s Right to Know End-of-Life Options Act (R2K) requires a physician, when asked, to provide the patient with information they otherwise might not be willing to discuss, such as referral to hospice or the right to terminate treatment.

Sparky once said, “The trick is to realize that after giving your best, there’s nothing more to give.” For a terminally ill patient, “the best” could mean fighting to prolong life, focusing on the quality of the days they have left, or balancing the two goals. The patient has to make the call about how they want to spend their remaining days. R2K ensures patients diagnosed with a terminal condition have the information they need to make the call.

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.