Death, of course, is unavoidable. But now, the details can often be negotiated.
In a significant shift, doctors and hospitals are working to give patients more autonomy at the end of life, offering them more options to decide how, where and sometimes even when they die.
Medical advances have helped make this autonomy possible. In the past, many terminally ill patients were faced with the stark choice of dying either in pain or in a morphine-induced haze, barely aware of their surrounding. But progress in treating pain and other common end-of-life symptoms, from respiratory problems and nausea to depression, means that dying patients today have many more choices about how their symptoms are controlled and how conscious and alert they want to be at the very end.
The movement has its roots in hospice care, a way of treating the dying that largely focuses on making patients comfortable and meeting their emotional needs when life-saving treatment is ended. But the new patient autonomy goes well beyond such efforts. The idea is that patients can do more than just quietly and comfortably ease into death. They can, if they choose, remain active participants in life.
One aspect of this involves a new emphasis on dying patients' mental health. While in the past doctors assumed that being depressed was normal for the terminally ill, some are now prescribing antidepressants and antianxiety medications even to those with only a few weeks left to live.
Doctors are also increasingly willing and able to help patients come closer to timing their deaths, sometimes helping patients who want to remain alive to see a particular event. R. Sean Morrison, a professor of palliative medicine at Mount Sinai School of Medicine in New York, recently had a patient with terminal pancreatic cancer who wanted to live to attend her grandson's bar mitzvah. Dr. Morrison kept the patient in the hospital and tried another round of experimental chemotherapy that he might not otherwise have advised her to go through, in the hopes that it would buy her a few extra weeks. The woman lived to see the celebration.
The majority of these efforts are taking place under the auspices of new so-called palliative-care programs in hospitals. Such programs -- which now exist in about 22 percent of hospitals -- essentially take the hospice goal of relieving symptoms and make it available to a wider group of patients. By contrast, hospice programs have traditionally been restricted to patients who have halted curative treatment, though some of these newer approaches are being tried in hospice settings as well.
In these programs, doctors are increasingly willing to keep trying a variety of treatments until something works. Charles Davis, 44 years old, is dying of a brain tumor. He was using a portable morphine pump at home, which left him only semiconscious, but he was still in horrific pain. Last month, doctors at the San Diego Hospice & Palliative Care program admitted him to its in-patient center and switched his medication to fentanyl, another opioid. The new medication brought his pain under control and allowed him to be more alert; he was then able to return home. Doctors have been working with his wife, Jean, to help Mr. Davis ultimately die at home and without pain. "What would make me happy is to get him home and have as normal a life as possible," Mrs. Davis says.
There can be barriers to getting this kind of care, in part because not all doctors and hospitals are up on the latest options. In a 2004 study published in the Journal of the American Medical Association, researchers surveyed the families of 1,578 people who had recently died and found that about one-quarter of patients didn't receive adequate treatment for pain and shortness of breath.
In hospitals, palliative-care services are paid for by insurance or Medicare like any other hospital care. Insurers also pay for at-home and in-patient hospice services. But patients who want care at home and aren't part of a hospice program (say, because they don't want to give up curative treatment), may have to foot the bill themselves.
Below are some of the new options that patients can discuss with their doctors.
Relieving Symptoms
The workhorse of pain medication is still morphine, a 200-year-old drug that is effective -- and controversial. That is because very high amounts can depress respiration and even cause someone to stop breathing.
But a number of more advanced pain treatments have been developed in recent years. And perhaps more significantly, palliative-care centers are finding success treating the dying with medications not necessarily meant for terminal illnesses. (There is little research on treating symptoms in the dying because studies of the very ill are difficult to do and there is scant funding.)
Doctors in the palliative-care center at the Cleveland Clinic, for example, have had success using antiseizure drugs such as gabapentin and valproate to treat nerve pain that often afflicts cancer patients, diabetic patients and those dying from kidney failure. Medications for osteoporosis, such as pamidronate, are now used to treat bone pain in cancer patients. Drugs that are used to treat chemotherapy-related nausea, such as granisetron and ondanestron, are now sometimes used by doctors at New York's Mount Sinai and other palliative-care programs to treat nausea that dying cancer patients may have even after stopping chemo.
Doctors at Dartmouth-Hitchcock Medical Center in New Hampshire and San Diego Hospice & Palliative Care have used epidurals, such as those commonly used during childbirth, to continuously deliver morphine or other anesthetics such as bupivicaine directly to the spinal cord in patients with severe pain. While there is a risk of infection, it also means that patients can get pain relief without the sleepy, drugged-out feeling that can arise with IV or oral versions of morphine.
Keeping patients symptom-free often requires doctors to juggle multiple medications. If every symptom can't be alleviated, some doctors at hospices and palliative-care programs are now allowing patients to choose which symptoms they want addressed. For example, sometimes shortness of breath -- which can be caused by congestive heart failure, lung cancer and other conditions -- can only be relieved if a patient is in a sleep state. "I've had patients who have said they would rather be breathless and awake," says Dr. Morrison of Mount Sinai.
There is also some new thinking on morphine itself. Recent studies suggest that morphine, though it can depress respiration, doesn't actually hasten death. A study published last year in the journal Chest showed that among 75 patients withdrawn from ventilators that help them breathe, those treated with morphine and antianxiety medications died in about the same time as those who weren't treated. The new data have made some doctors more comfortable about using morphine in big enough doses to control pain.
When to Die
The decision about when to say "enough" is now much more complicated than just whether or not to turn off the machines. Doctors at palliative-care centers and elsewhere are increasingly amenable to pursuing aggressive treatment for patients who are willing to endure it in order to gain even a little more time. And physicians such as Ira Byock, director of the palliative-medicine program at Dartmouth-Hitchcock, now coach patients and families to decide among a variety of deaths -- some quicker than others, or some more gentle than others.
For example, stopping dialysis in someone with kidney failure usually leads to a peaceful death -- the person gets sleepier and sleepier until he or she falls into a coma and slips away. Alternatively, the patient would ultimately die of something else, such as a severe infection or a gastro-intestinal hemorrhage that could make for a more painful death. Some doctors are reluctant to push aggressive treatment that will buy only a little time and perhaps cause more suffering.
Charles von Gunten, director of the Center for Palliative Studies at San Diego Hospice & Palliative Care, treated a young mother who was dying of a brain tumor. She wanted to stay alive -- no matter how much pain she was in -- for as long as she could feel the presence of her six-month-old child. Dr. von Gunten treated her with an aggressive course of chemotherapy to buy her some extra time. But after she lost consciousness and was no longer aware of her baby, life support was removed and she died. "It was so helpful to understand her goal and that we needed to be aggressive," Dr. von Gunten says. "We may have changed the timing of her death by a few days."
Where to Die
The movement in recent years to allow more people to die in their own homes is getting a further push from hospices and palliative-care programs. House calls from doctors and nurses and portable medical equipment, such as morphine pumps, are making it easier for people to die in familiar surroundings. The National Hospice & Palliative Care Organization's Web site (www.nhpco.org) allows users to search for local programs.
Much is also being done to educate families on how to care for a terminally ill person and what to expect as someone is dying. At Hospice & Palliative Care of Western Colorado, in Grand Junction, Colo., staffers give families a booklet that details what it will look and sound like as someone dies. (For example, the skin can become discolored and breathing often becomes irregular.)
Vailia Dennis, an 86-year-old single mother and former sales executive, is dying of congestive heart failure. She plans to do it in her San Diego home, where she lives alone with her dog.
Ms. Dennis's doctor and hospice program, San Diego Hospice & Palliative Care, have put her on low-dose morphine pills to control pain and have programmed the emergency-response button she wears on a necklace to call not 911, but rather a neighbor who will come to be with her, and a hospice program that will send a caregiver. Otherwise, dialing 911 could land her in a hospital. "I love this house," she says. "I'm absolutely paranoid about the hospital. No way can I find comfort there."
Mental Health
While deep sadness is normal and expected in dying patients, some doctors say that more-severe symptoms of depression can and should be treated -- even in patients with only a few weeks to live.
Traditional antidepressants, however, such as Prozac and Paxil can take weeks to work, time that some dying patients don't have. Now, doctors in palliative-care programs have found that using Ritalin can lift depression in just days. The approach is new: In 2000, researchers at the Cleveland Clinic published a study showing the efficacy of the drug in lifting depression in critically ill patients, and the practice has grown since then.
Ritalin isn't right for all depressed terminally ill people. Doctors say it shouldn't be used in patients with acute delirium or those with heart-rhythm problems.
Physicians increasingly are also focusing on patients' emotional and spiritual health. Patients who are conscious and alert are often encouraged to celebrate their lives and reach out to families and friends.
Susan Brace, a psychologist in Los Angeles, recently worked with a 71-year-old woman who was dying after a series of strokes. The woman made appointments with each family member to express her love. "It gave her a great sense of peace," Dr. Brace says. She died within a week.
New Approaches
There have been some important advances in treating the symptoms in dying patients. Here are a few of the new approaches:
DRUG / TRADITIONAL USE: Granisetron, ondanestron / chemotherapy-related nausea
HOW IT IS USED IN THE DYING: Nausea experienced by terminally ill cancer patients.
COMMENT:
These drugs are expensive, costing about $100 a month.
DRUG / TRADITIONAL USE: Pamidronate / used for bone diseases such as Paget's disease and osteoporosis.
HOW IT IS USED IN THE DYING: To treat bone pain in cancer patients.
COMMENT: The drug must be injected.
DRUG / TRADITIONAL USE: Valproate, gabapentin / anti-seizure drugs to treat epilepsy.
HOW IT IS USED IN THE DYING: For nerve pain in cancer patients and diabetic patients
COMMENT: These medications are generally well tolerated.
DRUG / TRADITIONAL USE: Epidurals / commonly used in childbirth
HOW IT IS USED IN THE DYING: To treat leg or pelvic pain in patients whose pain can not be controlled with other narcotics
COMMENT: There is a risk of infection and complications, including injury to the spinal cord.
DRUG / TRADITIONAL USE: Methylphenidate (Ritalin) / children with attention deficit-hyperactivity disorder.
HOW IT IS USED IN THE DYING: To quickly relieve symptoms of depression.
COMMENT: The effect can wane after about three weeks. For patients with a longer life expectancy, doctors prescribe antidepressants concurrently.