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

Archive for March, 2012

Threat to End-of-Life Choice Heads to Georgia Governor

Bill Will Force Unnecessary Suffering at Life’s End

Portland, OR – Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today expressed disappointment with a bill that undermines end-of-life choice in Georgia. The bill, sent today to Governor Nathan Deal’s desk, was initially aimed at preventing suicide coercion but will force unnecessary suffering on people near the end of their natural lives.

“Responsible medical practice at the end of life has no relationship to the crime of assisting a suicide,” said Barbara Coombs Lee, president of Compassion & Choices. “Treating the suffering of a terminally ill cancer patient is not similar to goading vulnerable young people to play Russian roulette.”

In drafting HB1114, the Georgia legislature tried to prevent assistance for people with mental illness to kill themselves, while also permitting rational end-of-life decisions and supportive medical care. They achieved the first goal, but fell far short in the second. Now doctors and patients are more vulnerable to accusations of murder and assisting a suicide for decisions and treatments to relieve end-of-life suffering.

HB1114 threatens compassionate implementation of advance directives, medical orders and responsible pain and symptom management. Doctors are at risk for criminal prosecution and civil litigation unless they can prove their decisions and actions were strictly “intended” and carefully “calculated” to treat pain.

The bill could have been even worse, said Coombs Lee. “Compassion & Choices fought to preserve the liberty and dignity of dying patients, and to protect the doctors, nurses and family members who care for them. Earlier versions gutted constitutionally protected rights and contained a dangerous provision that would have applied organized crime statutes to medical practice. This could have pulled dedicated doctors and nurses, families, loved ones, caregivers and even educators into unknowingly committing a crime.”

HB1114 creates uncertainty among medical providers and caregivers as to whether it is a crime when a licensed physician aids a mentally competent, terminally ill person in dying by:

• Providing palliative support to a patient who decides against dialysis, pacemakers, antibiotics or other medication, or who elects to stop eating and drinking;
• Administering palliative sedation upon the request of the patient;
• Prescribing medication to offer the comfort of knowing that a peaceful death is possible.

“We hope Governor Deal will veto HB1114,” said Coombs Lee, “and insist on a bill that protects private medical decisions between patients and doctors.”

Accusations of murder against those who provide palliative care are a growing national problem. Patients suffer when doctors are afraid to treat their pain. Patients who hope to end prolonged agony and advance the time of death are denied protection under the bill.

Confusion and disagreement about the reach of state assisted-suicide laws cause physicians to reject their patients’ end-of-life wishes and drive dying patients to endure prolonged, agonized deaths against their will, turn to violent means to end their suffering, or persuade loving family members to risk criminal prosecution.

“A law against assisted suicide,” said Coombs Lee, “should protect Georgians with disordered thinking from anyone who would facilitate attempts to harm themselves. But it should not interfere with options for comfort and support of terminally ill patients.”

Among Doctors, Fierce Reluctance to Let Go

By Paula Span
The New York Times
March 29 ,2012

The conversation took place two years ago, but Dr. Daniel Matlock still recalls it quite vividly. You tend to remember when a physician colleague essentially brands you a Nazi.

Dr. Matlock, a geriatrician who specializes in palliative care, had been called in to consult when a woman in her 70s arrived at the University of Colorado Hospital, unresponsive after a major stroke.

She’d done what we’re forever chiding people for not doing: She’d drafted a very specific advance directive and had even taken the trouble to have it notarized. It unambiguously said: no life support, no artificial nutrition or hydration, no nursing home.

The ambulance crew had put her on a ventilator — standard procedure. After the palliative team removed it, she was able to breathe on her own, which isn’t uncommon. She even opened her eyes, though she couldn’t track or follow objects and remained unresponsive. That’s when the prominent surgeon directing her care ordered intravenous fluids.

Dr. Matlock, alarmed at this direct contradiction of her preferences, tells the rest of the story in a post on the GeriPal blog, published by geriatricians and palliative care docs at the University of California, San Francisco. After talking with the patient’s sister, who held her medical power of attorney, he called the surgeon to suggest stopping the IV.

“You would have been hung in World War II for doing what you are doing now,” the surgeon said.

Let’s pause to think about that for a moment.

Within a few days, the woman was transferred to a hospice unit, where the IV was removed and she was permitted to die. But Dr. Matlock’s anger at his colleague and his sorrow at the woman’s treatment, or mistreatment, have persisted. “You work so hard to do what’s right for the patient,” he told me.

And he was sure he was right. Administering fluids to a dying patient increases the person’s secretions and makes breathing more difficult, palliative care doctors are taught. “Dehydration is a gentler death, with less agitation,” he said. But quite apart from that, the woman had done everything but stencil “no IV” across her forehead.

A palliative care consultant, however, couldn’t overrule the surgical team whose patient she was. “I went home that night feeling really bad,” Dr. Matlock said.

What prompted his account of this unpleasant exchange, all these months later, was a startling study recently published in The Journal of Palliative Medicine. After surveying nearly 700 physician-members of a national hospice and palliative medicine organization, the authors report that more than half had had at least one experience in the past five years of another physician or health care professional referring to their treatments as “euthanasia,” “killing” or “murder.”

This, despite palliative practices being broadly accepted as legal and ethical, as reducing suffering while honoring patients’ autonomy.

About a quarter of the respondents had heard similar accusations from a personal friend or family member, the study found. And 25 doctors (4 percent of the respondents) had been formally investigated on the question of whether they had hastened a patient’s death.

“It was cathartic for me” to read the study, Dr. Matlock said. “It was helpful to know I wasn’t alone.” But it’s not exactly reassuring news for the rest of us.

We’ve had frequent discussions here of end-of-life care and why the “good death” so many people want proves so elusive. We can, with ample reason, blame physicians who don’t want to talk or think about dying. (A favorite joke among hospice workers, who tend toward a dark sense of humor: Why are coffins nailed shut? To keep oncologists from administering more chemotherapy.)

And physicians have often responded with their own stories of family members who won’t accept that further treatment is futile and urge another operation, another drug, another something.

But here’s another part of the dynamic, apparently: Even when the system works as it’s supposed to, and palliative care specialists arrive like the cavalry to provide comfort care, to stop fruitless and painful interventions and to support what patients want, their own colleagues may brand them murderers.

It takes strong doctors to stand up to that kind of verbal abuse, to explain that courts and ethics committees have approved care that’s intended to reduce suffering, to point out that the patient’s own wishes are paramount. Perhaps they have to be stronger than we know.

“The culture is changing,” Dr. Matlock told me. “But it’s not changed yet.”

Vigilantes in Scrubs

A study published this month paints a troubling picture. Imagine palliative care doctors, working to deliver the best possible comfort care to their patients. Yet even as they meet the recognized best practices of their profession, their colleagues are judging their covert intentions and moral fiber.

Over half of the physicians who responded to the survey, published in the Journal of Palliative Medicine (JPM), reported they had been accused of “murder” or “killing” at least once in the past five years. Most often, their accusers were fellow members of the healthcare team.

Accusations came most frequently when doctors treated shortness of breath during ventilator withdrawal and when they increased doses of pain medication and sedatives to treat rapidly escalating symptoms.

Self-appointed moral police have been portraying end-of-life decisions as murder and trying to subvert them ever since the Cruzan case, in which the U.S. Supreme Court recognized the right to refuse life-sustaining treatment. That may be the first time noisy protestors harassed family members struggling over difficult, private decisions to do right by loved ones. Intrusive protests reached their pinnacle in the circus surrounding Terri Schiavo. Grandstanding lawmakers even tried to substitute their own diagnosis and judgment for those of doctors and responsible family at the bedside.

This month’s study reveals how deeply moral watchdogs are embedded in the ranks of medical professionals, and how much damage they can do. Doctors in this study faced investigation by their institutions, state medical boards, and state and local prosecutors. Accusers seem quite willing to slander and jeopardize the careers of their colleagues when they disagree with treatment decisions reached in consultation with patients and family members.

The problem is not new. An editorial in the JPM in 2005 explained the effects on those involved and the potential to distort the practice of palliative care:

A hospice medical director in a federal facility followed accepted guidelines when providing palliative sedation to a few of his terminally ill patients. This resulted in a formal investigation by the Office of the Inspector General. Over a period of 1 year, the physician faced criminal charges and the loss of his job. Although cleared from having performed either unethical or criminal acts, he was sufficiently upset by the experience that he left his position and moved to another state.

The training director of a palliative care teaching program reported, “When I first performed ‘terminal’ sedation on the ward, nurses really had a problem. Just last week, I had a resident accuse me of euthanasia, because I ordered a low-dose morphine drip. It’s part of the day-to-day way of life in hospital palliative care.”

Accused doctors in the current study reported mental distress and anger. None were ever convicted, but some suffered license suspension, monetary damages and forced relocation. Ultimately, patients will bear the most distressing consequence: increased end-of-life suffering. Who will treat pain or breathlessness aggressively again after being so accused and harassed?

We need specific legal protection for professionals who honor their patients’ end-of-life decisions and follow best-practice standards for managing end-of-life agonies. Unfortunately, current law in most states does not grant unequivocal protection to treatment that is appropriate for the situation and follows the patient’s wishes. The dominant thinking today is that legality of treatment hinges on the state of mind of the physician: Did the doctor “intend” the death of the patient?

The field of bioethics rests on four premises. These include autonomy – respect for the individual, and beneficence – actions intended to benefit the patient. Sometimes autonomy and beneficence are in tension. Palliative care doctors bear some responsibility for the current situation, as they have sought legal protection based on the beneficence principle and their own intentions, rather than a patient’s autonomy and self-determination.

When a doctor employs drugs that relieve pain, delirium and breathlessness, and also suppress respiration, they know it is possible that medication may advance the time of death. Current policies protect them only if they acknowledge death as a possible, unwanted side effect, and assert their only intention is to ease the patient’s suffering. The principle amounts to: What is going on in the doctor’s mind? Of course no one can know, and the unknowable nature encourages accusations of improper intent. “Intent” protection will never offer real security to doctors or optimal care to their patients.

The answer is legal protection for medical care consistent with the informed, documented healthcare decisions of the patient or the surrogate, and consistent with standards of practice. Physicians should be able to deliver excellent care, prevent suffering at life’s end and act according to a patient’s wishes. A patient or surrogate should understand and accept that aggressive, effective comfort care may advance the time of death. It should not be forbidden for a patient or surrogate to “intend” death when they opt for removal of ventilator support or any other life-sustaining therapy. Doctors should not feel forced to withdraw and undertreat the patient who states such an intention. Only with clear legal protection – based on patient autonomy – will good doctors be safe from self-righteous posses of second-guessers and accusers.

‘Best Care’: We Make Death Harder Than It Has To Be

By NPR Staff
March 26, 2012

Many people hope to die peacefully at home surrounded by their loved ones, but unfortunately it usually doesn’t turn out that way. Thirty percent of Americans die in nursing homes, more than half die in hospitals and nearly half of those people spend their last days in intensive care units.

In his book The Best Care Possible, Dr. Ira Byock argues that the way most Americans die is a national disgrace — an ethical, moral and economic crisis that will get a great deal worse as the baby boomers age.

Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center, says that modern medicine has provided unprecedented power to treat disease and help people live longer, but has also changed the focus of health care.

“We have a disease-treatment system more than a health care system these days,” Byock tells NPR’s Neal Conan. “That’s not necessarily a bad thing, but it’s not enough. We have to begin to care well for people who are living with these diseases, not simply the physiology and pathology itself.”

Byock describes his decades of work in hospice and palliative care that inspired his quest to transform end-of-life care.

Interview Highlights

On his patient ‘Maxie’

“Maxie … never wanted to talk about the end of life. She’d never made out an advanced directive, a living will or power of attorney for health care, like, you know, most of Americans. … Only about 30 percent of adults have these documents. … But then she became seriously ill. … It was a shock to the family.

“They couldn’t imagine that there was anything worse than their dear mother and mother-in-law … aunt and grandmother dying. And yet, they found out — as so many of our patients eventually do — that there are worse things than having someone you love so much die. There’s having them die badly, suffering as they die.

“And maybe the only thing worse than that is looking back and realizing in retrospect that much of their suffering was unnecessary.”

On consulting patients on advanced directives

“When I talk to people and encourage them to fill out these advanced directives, these days I don’t start by saying, ‘This is how you can protect yourself or retain control over your body.’ I say, ‘This is a way for you to take care of your family if a crisis happens and you’re unable to speak for yourself, and they, those that you love, will be left to struggle with decisions about your treatment and care.’

“… You can perhaps lessen the burden that they’re going to feel as they struggle with these decisions by shouldering it a little bit, by telling them what you think you would want. They’re still going to have to fit those values and preference to the particular condition and treatments being offered, but at least you can lighten the load a touch.”

On the challenges of delivering bad news to patients

“The open secret among clinicians is we really care about the people who are our patients. … That’s not unwholesome. … We get close to these people, and I think … aren’t clear in their communication. It’s wrong. It’s not good practice.

“But in fact, we hate to make people cry. And it sounds funny to say, but in fact I’ve seen so many good clinicians — oncologists come to mind, but also cardiologists — who are reticent to tell somebody that their disease is incurable.

“… I know, because I’ve been doing this for a long time, that clarity, although it may cause acute grief, is actually a gift in this sense, and it’s the right thing to do. In this case a sharp cut hurts less.”

Making a Difference, Even at the End of Life

By Tom Lauricella
The Wall Street Journal
March 24, 2012

From time to time during the past several years I’ve used this column to help readers through the challenges of end-of-life planning. Recently, my dad’s health took a sudden, sharp turn for the worse. My family and I found ourselves confronting many of those same difficulties.

Of course, watching my father’s life ebb was a wrenching experience. But as is often the case, there were added complications of scrambling to find appropriate care, contending with financial pressures and navigating family dynamics.

Just under two years ago, I wrote about my parents’ difficult financial position and lessons I learned from their experience. Having struggled with debt and job turnover, my parents lived with my sister and her family.

Meanwhile, as a result of the economic downturn, my sister lost a long-held job in late 2008. Like many others, she has had a tough time finding new, permanent work. She relied on my parents to help care for her young children.

In recent years, I, along with my sister, have been concerned about my dad’s health. But whether as a result of his upbringing or some other aspect of his life, he refused to see a doctor.

My dad, at age 79, looked extremely frail late last year. His appetite vanished as this year progressed. But to our growing dismay and frustration he still wouldn’t go to a doctor.

Finally, on a recent Sunday, too weak to sit up in bed and fading, he agreed to go to the hospital. The diagnosis was advanced pancreatic cancer.

Meanwhile, my dad was somebody who simply never wanted to acknowledge his own mortality.

My mom recalled that when my sister and I were young, she had to practically drag him to a lawyer to prepare and sign a will.

Thankfully he signed a health-care proxy just days before going to the hospital. When I later saw his signature, it was shaky and had lost its vigor. He signed it in the nick of time.

With my dad in bad shape in the hospital, we panicked. He was extremely uncomfortable and needed hospice care.

We considered home hospice; we could set up the downstairs in my sister’s suburban house with a hospital bed. But given jobs and child care, my sister and her husband couldn’t really pitch in. My mom wouldn’t have the stamina. It would require hiring round-the-clock care.

While Medicare provides some home-hospice coverage, we quickly recognized just how big the shortcoming would be: Hiring aid workers would still run us hundreds of dollars a day. My sister, working but not in a permanent job, had no financial cushion.

I had some, but the money was tied up primarily in retirement accounts, where withdrawals would be reduced by taxes and penalties.

When we considered the limitations of home care given its cost, along with other issues of caring for my dad in my sister’s house, it didn’t seem like the right solution.

My sister and my mom contacted everyone they could think of for hospice recommendations. I spoke with the hospital’s hospice coordinator. We needed a place that, first, would care for my dad and, second, would be within easy driving distance for my 77-year-old mom.

We found a place that had a bed in nearby Saddle River, N.J., called Villa Marie Claire. But it was costly. My sister and I decided it would do while we looked for an alternative that wouldn’t be as much of a financial burden.

It’s a brutal reality of our health-care system that money was even a topic. It magnified the emotional strain we faced. Guilt flared about counting the number of days we could afford.

It quickly became clear my dad was in even worse shape than we had thought. But he was already at a hospice that provided amazing care. Villa Marie has a guest wing where my mom or I could stay overnight. I felt strongly my dad should not be moved; our purpose was simply to make him as comfortable as possible in his final days. I resolved to carry whatever financial burden would result.

I fully expect my mom to be kicking around well into her 90s. While we could never afford a massive nursing-home bill, I’ve realized I can self-insure against the kind of shorter-term care my dad was getting. I’ve opened a dedicated account where every month I’ll deposit an affordable amount of money for just this kind of expense and won’t touch it no matter what.

When I write these columns, it’s my hope that some reader somewhere will learn something that will make a difficult time a touch easier.

As I’ve noted in earlier articles, it’s important to have the tough but important conversations early. In doing so—and when faced with a situation such as the one I’ve just been through—individuals can focus on their loved one’s care and their family’s well-being and not the bills.

Throughout my dad’s life he was active in his communities, trying his best to make a difference. Hopefully, with this column he’ll make a difference one more time.