Putting final wishes in writing helps prepare family for death

The majority of Americans hope to die at home, without pain, surrounded by family and friends. Yet three out of four people die in a hospital or a nursing home; 28 percent of seniors spend time in intensive-care units before they die; and one-third of people of all ages die suddenly without warning.

Too few Americans — even those near the end — take the time to plan their deaths. That's unfortunate, because it can mean depriving yourself of your last wishes. It can also help avert recrimination, regrets and needless medical bills for your family after you are gone.

Americans are so averse to the subject of death that "just thinking about it brings us halfway there," said Dr. Ira Byock, past president of the American Academy of Hospice and Palliative Medicine and the author of "Dying Well."

Karen Orloff Kaplan, chief executive of Partnership for Caring, a Washington, D.C., advocacy group for end-of-life issues, agrees: "In this country, the care we provide for people who are dying is mediocre at best."

An unexpected or impending death can thrust unprepared families into a thicket of complex medical, legal and emotional decisions.

Did the patient have feeding tubes in mind when specifying "no heroic measures?" Does a "do- not-resuscitate" order mean the spouse shouldn't have called for an ambulance? What to do about the estranged brother's objections to the rest of the family's consent to stop treatments for a parent? If a living will has been signed, where is it?

The most compelling reason to take charge of the end of your life may be that much will remain beyond your control.

For instance, people often won't know exactly how long they have left to live. In a study conducted by researchers at the University of Chicago, and published in the British Medical Journal in 2000, physicians on average predicted that their dying patients would live more than five times longer than they actually did.

The 468 hospice patients in Chicago in the sample lived an average of 24 days. But only 20 percent of the physicians had given them an accurate estimate of how long they had. An estimate was "accurate" when the doctor predicted the time remaining before death with 33 percent accuracy.

Doctors were overly optimistic in 63 percent of the cases and too pessimistic in 17 percent of the cases.

The inflated life expectancy can prevent people from making the best use of their final days. It can lead people to prolong medical treatments and to delay switching to hospice care, which focuses on relieving suffering until death.

Consequently, half of hospice patients die less than 36 days after seeking palliative care, and nearly 30 percent die within two weeks. Many experts say the optimal duration for hospice care is three months.

Instructions for final days

You can, however, take steps to plan your death. The most important move is to sign advance directives. These are legal documents that contain your instructions for your medical care in the event you are unable to make them. They include:

A living will, which spells out how far doctors should go to treat your condition. You can specify what you mean by no life-support treatments (chest compressions? dialysis? breathing tubes?) or what should be done if you are in a coma or brain damaged.

Medical power of attorney allows you to choose a person or persons to be your proxy for medical decisions when you become incapacitated. This agent has the power to override dissent from your physicians and your family about what types of treatments you should receive. So it's critical that he or she understands intimately what you'd want done under various scenarios.

Kaplan, of Partnership for Caring, said legal documents are only as good as the people executing them. She advises people to talk with their families about their wishes in detail.

"All by themselves, the advance directives are just paper; all by themselves, the conversations are just words," Kaplan said.

Five wishes. Washington is one of 35 states that legally accept a form of advance directive called Five Wishes. In addition to containing a living will and a medical power of attorney form, this 12-page booklet gives you space to list how comfortable you'd want to be (amount of pain killers, request for favorite music); what you'd want from people (prayers, companionship); and parting messages for loved ones ("I love you." "Remember me this way").

"Do-not-resuscitate" order. This tells emergency medical technicians and other health professionals not to attempt cardiopulmonary resuscitation if your heart stops or if you stop breathing. Washington and many states require a doctor's signature for a "do-not-resuscitate" order to be valid.

You don't need an attorney to sign advance directives. Copies should not be kept in a safe-deposit box but rather somewhere easily retrievable.

Only about 20 percent of Americans are believed to have valid advance directives. Without them, unmarried partners may get little or no say in choosing treatments. Washington law gives priority power to the patient's medical proxy, spouse, adult children, parents and adult siblings, in that order.

Inevitable conflicts

Even the best-laid plans can't eliminate all misunderstandings and unanticipated troubles. Experts say it's not uncommon for a family member — typically someone who's had a rocky relationship with the patient — to object to medical decisions made by the rest of the clan.

That may be because the dissenter is grappling with guilt or simply hasn't had a chance to hear the patient's wishes.

Kaplan once received an anguished late-night call from a New York man whose 88-year-old mother had suffered a stroke in her Florida nursing home. The woman was partly paralyzed, had pneumonia and had previously instructed her daughter, to whom she had given medical power of attorney, "If something happens to me, let me go."

But the woman's estranged second daughter flew in from California and insisted that her mother be artificially fed. The siblings eventually agreed to honor their mother's wishes. Had they not, the elderly woman could have died an entirely different death, Kaplan said.

"In the presence of that kind of family conflict, doctors will take the most conservative route (and pursue treatment) because they are afraid of being sued," she said.

Fear of litigation may also make some nursing homes resistant to pulling feeding tubes from dying residents.

Sometimes the families' only recourse might be to move the patient to a different facility.

Similarly, some hospitals, particularly those affiliated with religious orders, have policies against disconnecting respirators. If this is a potential problem, check with the hospital before being admitted.

The hospice alternative

No decision may be as pivotal in shaping a patient's dying days as opting for hospice care. Hospice is for patients who have stopped receiving aggressive medical treatments and who want to die comfortably. Anyone whose life expectancy is measured in months or weeks can receive hospice care at home or any place outside of a hospital.

Medicare, Medicaid and many private health plans pay for hospice services if a doctor has given you less than six months to live. But hospice will treat even those without insurance or those who can't pay.

Hospice helps patients and their families accept death as a natural part of living. Hospice nurses focus on keeping the terminally ill as comfortable as possible and maintaining the quality of the remaining life.

Rob Luck, a coordinator for the pre-hospice program for Seattle's Providence Health System, acknowledged that some people fear hospice care, equating it with giving up their fight to live.

"They think that if you get referred to hospice, these are your final days and you'd better put your affairs in order," Luck said.

Hospice is meant to neither hasten nor delay death. People with chronic, but slow, diseases such as multiple sclerosis or emphysema can remain in hospice care for a long time. You cannot continue hospice care while receiving medical treatment whose purpose is cure, not comfort. For instance, radiation for cancer would be permitted in hospice only if it's intended primarily to minimize pain, not to rid the patient of tumors.

Dealing with the end

Patients who are very close to dying may no longer want to eat or drink. Family members should resist the urge to force nutrition, said Byock, the palliative doctor. A feeding tube is a form of medical treatment, and patients have the right not to accept it, he said.

A recent study of hospice patients in Oregon found that people who opted to refuse food and fluids usually died within 15 days. On a scale from 0 to 9 with 0 being a very bad death and 9 being a very good one, those patients' hospice nurses gave their deaths a median score of 8.

"It's not painful at all, actually," Byock said. "Refusing to eat or being unable to eat is the way people have died since the beginning of time."

Byock and other experts believe that hearing is one of the last senses to leave. They suggest that families talk to and touch the patients even if they are unconscious.

By then, Byock hopes the dying person would have said the four things he believes matter the most: "Please forgive me," "I forgive you," "Thank you" and "I love you."

"Then you're prepared to say goodbye."

Kyung Song: 206-464-2423 or ksong@seattletimes.com