Many of us think of death as the worst possible outcome for a terminally ill patient, but Judith Schwarz disagrees.

Schwarz, a patient supporter at the nonprofit Compassion & Choices, says prolonging death can be a far worse fate. For many patients, good palliative or hospice care can alleviate suffering, yet “a small but significant proportion of dying patients suffer intolerably,” Schwarz says.

Based in the New York area, Compassion & Choices is an organization that helps terminally ill patients and their families make informed and thoughtful end-of-life decisions to hasten a patient’s death. These decisions are not made impulsively, Schwarz tells Fresh Air‘s Terry Gross. “Nobody makes this choice unless the burdens of living have so consistently, day after day, outweighed all benefit.”

Schwarz notes that her organization does not help patients kill themselves, and their work should not be confused with assisted suicide. “They are dying,” she says. “They are on a dying trajectory. The only choice they have is the circumstances of their death and what kind of disability they will be suffering as they approach that time.”

Compassion & Choices supports the right to die but does not work outside the limits of the law, which varies from state to state. There are now three states — Washington, Oregon and Montana — where, in certain instances, it is legal for doctors to prescribe medication to hasten death.

As patients and their families make these excruciating decisions, they consult with doctors who evaluate their end-of-life options. Making decisions to hasten death “requires a tremendous act of love on the part of the family,” Schwarz says. “Because actually, what this patient is doing is leaving them, and leaving them perhaps sooner than their disease would require.”

Interview Highlights

On our conflicted feelings about hastening our own deaths

“People who think they want to be able to, for example, take a lethal amount of medication to end their life — they speculate that that’s how they are going to feel, but they actually don’t know how they are going to feel when they get to the point where their quality of life is so diminished that they really wish they were dead, that they would not wake up the next morning. But to take that step, to take that final step to cause your own death in one very … dramatic act is very, very hard, and most people don’t do that.”

On existential distress and medical prescriptions to hasten dying

“The Oregon Death with Dignity Act has been around for 14 years now, and the … primary reasons for patients asking their physician for this prescription have remained consistent over all of those years. It’s not about pain; pain can actually be managed … that’s not why people want to hasten their dying. They do [it] because they’re not able to do any of the things that they’ve always enjoyed doing — that give them any kind of pleasure. They can’t do those things anymore. And they have a complete loss of autonomy, they’re dependent upon other people to care for them, and they feel that they’ve lost all dignity. You have to understand, Terry, this doesn’t matter for everybody, but for those people that it does matter to, it matters profoundly. This is really what we really think of … as sort of existential distress — the meaningless of having to just wait for this death to occur.”

On the American Medical Association’s definition of physician-assisted dying as incompatible with the role of the physician as healer

“I suppose that’s a comforting position to take, but it doesn’t really speak to the nature of suffering, and it doesn’t speak to a patient’s wish to be treated with dignity and to be heard. We talk about ethical principles of beneficence and non-maleficence, that death is deemed the worst possible outcome that should be prevented at all costs. Well, I beg to differ. There are many people for whom death is not the worst thing that could happen to them. In fact, prolonging their dying is the worst thing that could happen to them, and the notion of healing in that environment strikes me as a bit of a one-sided understanding of the relationship.”

Listen to the entire program here.

When a parent dies, it’s common for surviving children to have a raft of regrets, from not spending more time with Dad to not telling Mom you loved her to failing to do more for them in their final years. Today there’s often one other regret in the mix — not protecting a parent from invasive end-of-life interventions.

Few of us die in our own beds now. Modern medicine keeps many of us living longer, and then some of us die by inches, in an ICU or on a ventilator, sedated or in excruciating pain, while others fade slowly with Alzheimer’s disease or other dementias. When my mother died 15 years ago, after much unnecessary suffering, I determined to keep her fate from becoming mine.

Mom was an extremely healthy and active woman who, until age 85, had few medical problems besides arthritis. In her mid-80s she displayed some memory loss, though nothing that inhibited her lifestyle. I suspected she was developing Alzheimer’s, as her brother had, but that she had many active years left. She also had a heart valve that needed replacing or she’d face serious restrictions of her daily activities, along with an increased likelihood of a heart attack.

She wanted the surgery, and it was a success. But then she had an allergic, near-fatal reaction to the valve, after which she went rapidly downhill cognitively and became unable to take care of herself and severely depressed. Two years later, when her kidneys failed, her doctor suggested dialysis, which would have gone against her living will specifying no further invasive treatments. I arrived at her Florida home just in time to refuse the dialysis. She died peacefully at home, under hospice care, two weeks later. We had spoken about her wishes, and I knew that’s what she wanted.

After my mom passed away, I realized that I had to begin to make hard decisions about my own death, when I was still relatively young and healthy, to avoid an equally drawn-out end. Jane Brody, a New York Times health columnist and author of Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life, helped me craft these five steps, designed to increase one’s chances of a dignified death (although there are, of course, no guarantees):

1. I will refuse major surgery, especially cardiac surgery, after 80. People in their 80s who have major surgeries, or spend time in ICUs, commonly suffer cognitive decline afterward, even if they don’t have dementia to begin with, according to multiple studies. A heart attack is an easy way to go. Progressive mental decline is not.
2. I will appoint a health-care proxy whom I know will carry out my wishes. I have an adopted daughter who is still a teen, and an older former foster daughter who has pledged to care for me in my old age, but has also told me she could never “pull the plug.” My friend Wendy, younger than I, and medically educated, is no wimp, and so she’s my proxy. Brody emphasizes that anyone you appoint to the role must, first, not be easily intimidated by doctors. She cites the experience of a friend whose father was incapacitated by a stroke. When the man’s doctor wanted to insert a feeding tube, her friend refused, but the doctor insisted, saying, “I don’t let my patients starve.” Four years later, the woman’s father remains alive in a vegetative state, and his medical expenses have decimated his only child’s finances, as well as his grandchildren’s. If I’m ever in that situation, I know that Wendy would stand up to that doctor for me.
3. I will craft a meaningful advance care directive so my doctors and proxy know my wishes. When drawing up a health-care proxy, Brody says, the advice of an attorney isn’t enough; a doctor should also review the document to help you understand exactly what you’re writing and signing. You need to specify what you mean by phrases like “do not resuscitate” or “I don’t want to be put on a respirator,” because there may be cases in which you would want to be on a respirator temporarily. Similarly, if you use the term “quality of life,” you must state exactly what that means to you. (To me, it means still being able to read and write.) Brody recommends the website of National Healthcare Decisions Day as a resource for crafting directives. The Conversation Project can help you plan how to communicate your wishes to your family.
4. I will fill out a physician order for life-sustaining treatment (POLST) to address resuscitation outside a hospital. Do-not-resuscitate documents are applicable inside hospitals. But many people do not realize that you have to have a form such as a POLST if you don’t want paramedics to resuscitate you, in your home or elsewhere, after a heart attack or respiratory crisis. Otherwise, EMTs are obligated to give you CPR, whether you want it or not. Only certain states currently recognize POLST forms; click here to find out if yours does. If you have a POLST, your partner or children should be aware of it and prepared to share it with EMTs. If the paramedics never see it, there’s no way to be sure your wishes will be respected.
5. I will have, I hope, the fortitude to check out before I have advanced dementia. Alzheimer’s disease appears to run in my family, but I don’t want to dwindle away until nothing is left of my mind, burdening others with my care. Compassion and Choices, formerly known as the Hemlock Society, is a nonprofit organization dedicated to expanding and protecting the rights of the terminally ill. Its website offers resources about advance directives and living wills, and while it does not advertise the fact, it also has an End of Life Consultation Program to help families achieve a peaceful death for a loved one. Physician aid in dying, which Compassion and Choices supports, is illegal in every state except Oregon and Washington, but the group can help families weigh other options, such as discontinuing extraordinary measures.

There’s no way to predict when or if California will offer what’s known in Oregon and Washington as Death with Dignity, or physician-assisted aid in dying, but I’ll keep you posted on a case in New Mexico that could have implications here.

In the New Mexico case, said Kathryn Tucker, legal affairs director for a nonprofit advocacy group called Compassion & Choices, “We hope to clarify … that a vague statute that makes a crime of ‘assisting suicide’ does not reach the conduct of a physician providing aid in dying, because of course the choice of a dying patient for a peaceful death is not, and ought not be conflated with, ‘suicide.’”

Tucker said the case in question involves a woman with advanced uterine cancer who has said she would like to have, as one option, the right to avoid prolonged suffering by obtaining doctor-prescribed medication she could ingest to bring about a peaceful death if she finds her dying process unbearable.

ucker said California’s statute on assisting a suicide is similarly vague, and if the New Mexico court rules in favor of allowing aid in dying, “it could have persuasive influence in California.”

To learn more about the legal and medical issues on this topic, go to www.compassionandchoices.org and check my video chat above with Tucker and Dr. Judy Neall Epstein, director of the End-of-Life Consultation Program at Compassion & Choices.

Many elders see few options as illness advances and bodily functions deteriorate. Yet options always exist that are preferable to violence and premature death. Death remains a taboo subject in our society, so elders feel they cannot speak openly about situations where they might deem death preferable to a deteriorating and declining quality of life.

“No one, no matter what their condition, should feel they have to resort to violence when confronting advanced illness,” said Dr. Robert “Nate” Nathanson of Waialua, Hawaii. “Patients and their caregivers need to feel safe talking about unbearable symptoms and their feelings of desperation.”

People in Hawaii have many options as they approach the end of life, if they contact a knowledgeable and sympathetic listener. “The fact is that an honest conversation can often prevent a tragedy,” said Dr. Nate, “by leading to respite care, hospice, pain control, counseling or other forms of support.”

Since 1993, Compassion & Choices’ End-of-Life Consultation program has served thousands of clients, helping them find alternatives to violence. Peaceful, gentle means always exist to end life in a way that honors the life lived. The purpose of Compassion & Choices’ End-of-Life Consultation program is to ensure excellent end-of-life care and, if that care does not relieve unbearable suffering, provide information on a client’s options for a peaceful, dignified death. Individuals seeking information about end-of-life decisions can access Compassion & Choices Hawaii’s End-of-Life Consultation service by calling 1-800-247-7421.

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.