End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Archive for December, 2011

The Unspoken Diagnosis: Old Age

By Paula Span
The New York Times
December 29, 2011

Dr. Alexander K. Smith is a brave man.

It has taken physicians a very long time to accept the need to level with patients and their families when they have terminal illnesses and death is near — and we know that many times those kinds of honest, exploratory conversations still don’t take place.

Now Dr. Smith, a palliative care specialist at the University of California, San Francisco, who also practices at the San Francisco Veterans Affairs Medical Center, and two co-authors are urging another change, one they acknowledge would “radically alter” the way health care professionals communicate with their very old patients.

In a recent article in The New England Journal of Medicine, they suggested offering to discuss “overall prognosis,” doctorspeak for probable life expectancy and the likelihood of death, with patients who don’t have terminal illnesses. The researchers favor broaching the subject with anyone who has a life expectancy of less than 10 years or has reached age 85.

“Advanced age itself is the greatest predictor of poor prognosis,” Dr. Smith told me in an interview.

By age 85, the article points out, the average remaining life expectancy for Americans is six years. An 85-year-old has a 75 percent chance of living another three years, but only a one in four chance of surviving for 10. Which category a particular old person falls into has much to do with the medical problems he or she has, or doesn’t have, and with his or her ability to function.

When the odds are that they have only a few remaining years, should doctors discuss that with them?

Dr. Smith and his co-authors, Dr. Brie Williams and Dr. Bernard Lo — a geriatrician and an internist, respectively — vote yes. “This is about empowering patients to make informed choices and encouraging individual decision-making,” he said.

Sadly, it takes guts to propose this when mention of the D word to patients still raises alarms. The Obama administration had to cancel plans for Medicare to reimburse doctors when they discuss end-of-life care with their patients. Death panels! Rationing!

But to Dr. Smith, understanding how much time remains could help his older patients make the most of those years and help them ward off interventions, tests and treatments whose benefits, if any, are years away but whose harms could be immediate.

A “substantial minority” of older patients won’t want to have this discussion, Dr. Smith acknowledged. “It’s important to offer the information, not force it on people,” he said.

But in his experience, it’s the protective family caregivers who object to talking about prognosis, more than their older relatives. “A lot of very elderly patients realize they’re in their final years,” he said. “This doesn’t come as a surprise to them. My friends in their 90s are already thinking about it.”

He cited a study he and colleagues published in The Journal of General Internal Medicine, based on interviews with 60 older people with disabilities, their average age 78 — an admittedly small but ethnically diverse sample. About two-thirds told researchers they’d want their doctors to tell them if they had less than five years to live. (Readers here had even stronger opinions: see this post about public access to longevity indexes.)

And when they do think about it, Dr. Smith continued, “they want to get their finances in order, plan for long-term care, spend time with children and friends.” They may be able to take fewer medications and undergo fewer procedures, with the emphasis on quality of life, or otherwise shift priorities.

“This is a challenge to people,” Dr. Smith acknowledged. “I’ve had reactions from ‘This is terrific; I’ve been arguing for this for years,’ to a mentor at U.C.S.F. who said, ‘This is ridiculous; my patients don’t want to hear this, and there is no way to predict life expectancy anyway.’”

But while it’s true that no one can foretell a particular individual’s death with any certainty — and health care workers should be clear about those limitations, Dr. Smith emphasized — a number of geriatric calculators do provide reasonably good projections, based on several health factors, age, cognitive status and functional abilities and sometimes laboratory test results. An index developed by Dr. Smith’s U.C.S.F. colleague Sei Lee, for example, can correctly predict mortality within four years about 75 percent of the time.

Still, it’s O.K. with Dr. Smith if professionals and patients have strong reactions, pro and con. “The point of the article is to get a national conversation started about this,” he said. It’s a conversation you’re invited to join in the comments section below.

Open the discussion on dying

By Steve Lopez
Los Angeles Times
December 28, 2011

Last week, my dad was taken on a practice run from his Northern California nursing home back to his house. He’d had recent hip surgery, and the idea was that if he could master the challenge of getting in and out of the car and the wheelchair, he could leave the facility and begin hospice care in his own home.

But first he had to get there. You go down by the high school, my dad told his driver, an aide from the nursing center. The school, which my dad attended 65 years ago, was in precisely the wrong direction. But he told the driver to keep going, directing him past the primary school and toward the San Joaquin River, also in the wrong direction.

The confusion was cleared up with a call to my mother, who was waiting for them in the house that she and my father have lived in for the last half-century. My father hadn’t remembered how to get to that house, but he had remembered how to get to the part of town where he had grown up, with five brothers and sisters, all of them now long gone. It was as though his mind had worked an elegant trick, guiding him back to where his life began, and, in a sense, truly taking him home.

In the past year, my dad has found himself in a lot of unexpected places — physically and emotionally — as he nears the end of life. And he’s taken the family along with him. It’s amazing to me now, looking back, how little I really thought about the end of life, other than its inevitability. I’m not alone.

About 75 million boomers are approaching old age, and it’s no wonder they’re beginning to have questions about the way we die, even if they’re not sure how to raise them. My dad has always been one to start conversations with strangers, and a lot of people who’ve been reading about his challenges have wanted in on this one.

Over the past year I’ve had the privilege of meeting and talking to people as they approach the great unmentionable with varying degrees of fear and courage, resistance and surrender. Many more have shared the very personal details of their own journeys at http://www.latimes.com/lifeanddeath, offering advice on the many medical, moral and legal end-of-life quandaries.

And it turns out we have a lot to learn from one another.

I’m thinking back now on my friend Lawrence Tolliver, a barber whose own son died of cancer this year just before my father turned critically ill. I accompanied Tolliver to a mortuary, where he bravely gave his son a proper haircut for his funeral. I’ll never forget Tolliver’s loving tribute from a church pulpit, celebrating his namesake’s life and telling mourners his son’s suffering had come to a merciful end.

In Los Feliz, Freddie Ramos, who decided against more chemo to treat his advancing cancer, told me that “living in fear of death is no way to live.” And in Santa Barbara, Colleen Kegg lamented the absence of a death with dignity law in California and discussed her plan to starve herself when a terminal neurological disorder advances. “I am a strong believer in the fact that life is about quality, not quantity,” she wrote in a statement documenting her end-of-life wishes. In Santa Clarita, as he made house calls, geriatric doctor Gene Dorio told me of his deep respect for his patients’ choices — those who want to let go and those who insist on fighting for every breath.

What I’ve learned along the way is that we have to get past the fears and cultural taboos that prevent us from discussing death with loved ones. We need to make our wishes known in advance healthcare directives, sparing friends and family the psychological trauma of impossibly difficult decisions. We need more information on end-of-life choices and broad reforms of Medicare, which gladly pays for the tools of slow suffering in terminal patients — feeding tubes, hip replacements, etc.— but is stingier about paying for palliative care despite lower costs and higher patient satisfaction.

One of the great tragedies and cruel ironies of American politics is that we stand no chance of hearing workable solutions or honest discussion from candidates in an election year. So a popular demand for policy changes may be the only hope, and I invite you to make yourself heard at The Times’ Life and Death page. I’m sure my dad would appreciate your contribution, given his genetic, long-standing lack of faith in the ability of Congress or the White House to lead the way on matters of great importance.

I flew north to see him Monday, and hospice care has gotten off to a rough start. Not so much for him; he’s thrilled to be out of hospitals and nursing homes and back in his humble castle. But my mother and sister are the primary caregivers, and the physical and emotional demands are wearing them down. I worry as much now about their health as I do about my father’s many life-threatening conditions. The task this week will be figuring out whether to hire backup help when hospice staff isn’t there or to instead move him into assisted living, which he strongly opposes.

You see a once-vital man this compromised and your heart aches.

Maybe the last gift you get from someone you love, before they’re gone, is a greater appreciation of life. Freddie Ramos put it perfectly. “Living in fear of death is no way to live.”

On Monday, my family did what we’ve always done at this time of year. We had a nice meal, put on some holiday music and played cards. A part of my father was there with us. Another part of him may have been wondering how to get home.

Wishing for the right to make that final exit

By Steve Lopez
Los Angeles Times
December 18, 2011

Colleen Kegg hasn’t worked out the details of her exit plan yet. But about one thing, Kegg is clear: When she can no longer feed herself or go to the bathroom without assistance, she will take steps to end her life. A rare and incurable neurological disease is gradually stealing the things the 60-year-old Santa Barbara-area resident lives for, and she wishes a California physician could legally prescribe life-ending medication, as doctors can in Oregon, Washington and Montana. Instead, she’ll have to find another way.

“I know I can stop eating and drinking,” Kegg told me one evening in her sister’s home, her speech already slowed by corticobasal degeneration, a condition somewhat similar to Parkinson’s and Lou Gehrig’s disease.

To Kegg and her family, it seems unjust that how she must die is dictated in part by law, and influenced by religious convictions and social mores she doesn’t share. Starving herself could make death drag out for a couple of weeks, while just north of the state border, people can say their goodbyes and leave on their terms, quickly, comfortably and peacefully.

It’s not that California hasn’t had its own shots at offering aid in dying, which, by the way, is now the preferred language among supporters of what has long been referred to as assisted suicide. Californians defeated a 1992 “death with dignity” initiative, 54% to 46%, and two “compassionate choices” bills between 2005 and 2007 died in the state Legislature. Former Assemblywoman Patty Berg, a Catholic who lives in Eureka and wrote the bills, said religious leaders and some physician groups lobbied against expanding end-of-life choices, despite a 2006 poll that said 70% of Californians believed incurably ill patients should have a legal right to life-ending medication.

Since I began writing about these issues in July, when my father took ill, I’ve had readers argue that how and when we die is not for us to decide, but is in the hands of a higher authority. I respect that view, but I’ve heard from far more readers who make a humane argument for options to avoid lingering and painful deaths. Many say that once they reach the point where they are simply being kept alive — as opposed to living — they want to have the choice of ending their suffering.

Bill Sanford, a retired Methodist minister who lives near Merced, sees no conflict between his Christian faith and his desire to end his life when his advancing Parkinson’s disease further limits him and puts a burden on his loved ones.

“We’re fiddling with the date of our death throughout our lives, as to whether we use drugs or alcohol and tobacco, whether we exercise right,” said Sanford. He believes that hastening death can be a “well-considered, rational choice.” For himself, he said, he has no desire “to pour resources into a jalopy that has no chance of being fixed.”

Both Sanford and Kegg have discussed their options with Compassion & Choices (http://www.compassionandchoices.org), which offers end-of-life counseling nationwide, including advice on what combination of legally obtained medication, properly self-administered, can hasten death. Sanford said he isn’t yet ready to stop living, but when he is, he may well use such a medicinal “cocktail.”

Dick Wesley, a Seattle intensive-care physician who has Lou Gehrig’s disease, had a better option. Because he lives in Washington, he was able to simply have his doctor write a prescription for him under the state’s death with dignity law.

“As a physician, I’ve seen way too many people who were kept alive with no quality of life, simply because it was possible to keep them alive,” said Wesley. Already, he said, his disease has left him unable to walk or brush his own hair. “When I can no longer read and no longer talk, then I doubt life will be worth living.”

Wesley said he got the prescription not knowing whether he would someday use it. If he dies suddenly, so be it. But under another scenario, he will get his prescription filled, call the family together and say his goodbyes.

In Oregon and Washington, the number of people who obtain life-ending medication is far greater than the number who actually use it. Many, like Wesley, seem to want the comfort of knowing they can take their own lives when that seems like the best choice, without having to play amateur pharmacist or inhale automobile exhaust or put a gun to their heads.

Kathryn Tucker, legal director for Compassion & Choices, says her group hasn’t given up on pushing to give Californians access to aid in dying, but she said it’s more likely to happen through legal action than legislation.

But that probably won’t happen soon enough for Colleen Kegg. A former mechanical engineer for the U.S. Geological Survey, she used to slog through streambeds measuring river flow and get hoisted onto oil rigs off Santa Barbara to conduct inspections. She still loves to travel the world, and she had until recently been taking hours-long bicycle rides and bracing ocean swims. When I met with her last week, she was preparing for a trip to Ecuador with her husband, Bob, daughter Katie and niece Sally. She was excited about it, and trying to focus on living rather than preparing for death. But she knew this could be her last trip.

In 2007, Colleen and Bob lost their son, Jeff, to cancer. He was 22. The thought of now losing his wife brought Bob to tears as we sat at the dining room table, although he strongly supports his wife’s right to make the decision.

In preparation for what lies ahead, Colleen collected her thoughts in a letter last month that she sent to Compassion & Choices and has shown to her family.

“My ability to speak is already greatly impaired,” she wrote, “and in the later stages I will be unable to communicate my wishes in any meaningful way. I want to clearly document my wishes so that they may be carried out to the extent possible and to avoid any possibility of legal or emotional trouble later. I would like it to be known that I have no intention of living life when real life is over.”

She said her thoughts on death and dying have been informed by the loss of loved ones.

“I absolutely want to live well and happily as long as possible. But I am a strong believer in the reality that life is about quality, not quantity.”

Bill Allowing Patients To Detail End-Of-Life Treatment Preferences Heads To Governor

By M. Teresa Ruiz
NJToday.net
December 16, 2011

Legislation aimed at ensuring that people with chronic or terminal illnesses are treated with dignity and respect in their final days by ensuring their medical wishes are known by medical professionals providing them care was approved today by both houses of the Legislature. It now heads to the desk of Gov. Chris Christie.

The bill (S-2197) would establish the framework for a program that would allow individuals to use of Physician Orders for Life-Sustaining Treatment (POLST) forms in New Jersey. The POLST form is a statewide, standardized document that essentially converts a person’s wishes regarding life-sustaining treatment into a medical order. These forms are currently being used, or are in the process of being established, in more than 30 states.

“People have the fundamental right to make their own decisions regarding end-of-life care,” said state Sen. M. Teresa Ruiz (D-Essex/Union), a sponsor of the legislation. “This bill will create a program that allows patients to convey specifically how they would like to be treated in the event they lose the capacity to express their preferences regarding life-sustaining treatments. The POLST form will help to ensure that people are, in fact, able to decide how they want to live out their time here, and that their wishes are well-known by the medical professionals providing them care.”

The bill would require the Department of Health and Senior Services to establish the POLST Paradigm Program to enable patients to indicate their health care preferences through a POLST form. The state Health Commissioner would be required to designate a patient safety organization (PSO) to develop a form, and promote awareness of the program among health care professionals, emergency responders and the general public. The patient safety organization would also be responsible for providing ongoing training of health care professionals and emergency responders.

Whereas advance directives, such as living wills, in many cases are designed simply to name an individual to make health care decisions for the patient if he or she becomes incapacitated, a POLST form provides a specific and detailed set of instructions for a health care professional as to the patient’s preference for the use of various medical interventions.

Under the legislation, a POLST form would only be valid if signed by the patient, or by the patient’s representative, as well as the attending physician or the advanced practice nurse, along with the date of signature. A patient at any time would be permitted to amend or revoke a POLST form, or otherwise request treatment other than what was ordered on the form. In completing a POLST form, a patient would also determine whether their representative would have the authority to revoke or modify the POLST in the event the patient loses decision-making capacity.

The Senate gave final approval to the bill by a vote of 37-0. The Assembly approved the bill by a vote of 66-1-4.

Plain Speaking at the End of Life

By Paula Span
The New York Times
December 14, 2011

Dr. Stephen Workman, an internist at the Queen Elizabeth II Health Sciences Center in Halifax, Nova Scotia, takes exception to the language physicians use with patients near the end of life. In one of his recent publications, he called language the most important tool health professionals have to improve the care of dying patients.

I wanted to know more about his ideas, so we spoke by phone.

Q.

You’ve decried the way hospitals and their staffs treat the dying, calling it “an avoidable tragedy.” Why does that happen?

A.

The system is geared for intervention. The narrative of medicine, the stories doctors love to tell and patients love to hear, is that we can identify the problem and fix it. It’s hard to say when that’s no longer true, but there comes a time for all of us.

If physicians challenge their belief that they can cure everyone, they will identify a lot of people who are dying or at risk of dying. And generally care gets pretty rational after that. Once we recognize that someone is dying and that dying people have a claim upon us, things usually become more humane and compassionate.

Q.

Can language make that much difference?

A.

You’re always struggling against expectations. Something else can always be done; there’s always another test and another treatment. So it’s important to let people know when we foresee death.

When I see patients who I think are at risk of dying, I say to the family and patient, “You could die during this hospital admission. Is that something you’ve been thinking about?” Then you can go forward and ask, “What have you been thinking, and what are your expectations?” When you plant the seed that death may be the outcome, people have more acceptance.

They can initially be very shocked: “My goodness, I never knew he was that sick.” They need time to come to terms with it. So you give them more time, rather than tell them in the I.C.U. that it’s time to turn off the ventilator.

If you support them and attend to their needs, most patients and families are very accepting.

Q.

You specifically say someone is dying?

A.

If death is such a terrible thing that I, the doctor, am unable to face it, then I’m asking too much. If I can’t talk openly about dying, how can my patients and their families bridge that gap?

Q.

Why do you disapprove of the more standard approaches? Doctors often say someone is “doing badly” or is “seriously ill” or “critically ill.”

A.

They’re true. But if you say, “Your father may well die,” you will get a different response. When you tell someone that, you create a moral obligation to deal with the fallout, the tears and grief and anguish.

Attempting to avoid that is like wanting to do surgery but not ever wanting to see a patient bleed. You can’t give honest, compassionate, effective care if you’re not comfortable seeing someone cry, and you’ll never give good care at the end of life.

Q.

You’ve written about your preference for telling families that treatment hasn’t been effective.

A.

We have to acknowledge the impotence of our attempts at some point. “We’re not winning. The treatment’s not working. She’s dying despite our best efforts.” People understand if you make it clear that treatment has failed. It’s not that we’re giving up; it’s that we really tried, and we can’t save her.

Q.

But you’d rather not say, “She’s failing to respond to treatment.” Why’s that?

A.

Because it’s shifting responsibility. “The patient is failing to respond” — that naughty patient! As if a good patient would get better. I prefer, “Our treatments aren’t working.” That puts the responsibility on me.

Let’s acknowledge that the human body is incredibly complex and our treatments are simple and only work sometimes. The problem is not the patient; it’s our technology. Let’s be more humble.

Q.

Similarly, you don’t speak in terms of “switching to comfort care.”

A.

I don’t switch to comfort care. I discontinue any treatments that don’t contribute to comfort. Because if this is the day you’re switching to comfort, what kind of care are you switching from? A patient’s symptoms, like pain or shortness of breath — weren’t those important yesterday?

There is no switch. We are always providing comfort care. We’re going to stop the things that don’t help you be more comfortable. Once you acknowledge that a patient is dying, nobody says, “Continue doing the things that hurt.”