The Dying Process Can be Eased for Cancer Patients and Families
Oncology
Heather Lindsey
May 26, 2000
Although the number of deaths from cancer declined between 1990 and 1997, more than half a million people are still expected to die from the disease this year. The dying process is often emotionally and physically draining for both patients and their families. To help them cope, end-of-life care needs to be improved, say experts.
Medical care is crucial for dying patients, but psychological and spiritual issues must also be addressed, said Karen E. Steinhauser, Ph.D., of the Veterans Affairs Medical Center in Durham, N.C., and lead author of a new study on what constitutes a “positive” dying process, published in a recent issue of the Annals of Internal Medicine.
“When physical symptoms are properly relieved, patients and families may have the opportunity to address the critical psychosocial and spiritual needs they face at the end of life,” said Steinhauser. “Efforts to improve end-of-life care must take these multiple dimensions into account,” she added.
Steinhauser and her colleagues at Duke University Medical Center and the University of Chicago questioned 12 focus groups with an average of six people over a four-month period. Participants included doctors, nurses, social workers, chaplains, hospice volunteers, patients with cancer or AIDS, and family members whose loved ones had recently died.
Concerns about relieving pain
Whether a patient or a health-care provider, many people in these focus groups said they feared pain associated with death. For example, health-care professionals described their concern about not giving enough pain-relieving drugs to patients toward the end of life.
“Often, there are inappropriate concerns about addiction from providers, patients and families,” said Steinhauser. “There are legal concerns. There are fears of killing the patient or assisting in dying, and there's lack of recognition of pain.”
Doctors are often not taught how to recognize and treat pain, said Kenneth J. Pienta, M.D., professor of medicine and surgery at the University of Michigan Comprehensive Cancer Center and a principal investigator of a palliative (symptom-relieving) care research program there. “[In addition], patients aren't truthful about how much pain they are in because they are afraid of becoming addicted to narcotics.”
All of the focus groups comprised of health care providers in Steinhauser's study expressed regrets about patients who had died in pain. These findings reflect studies showing that 40 to 70 percent of Americans experience pain toward the end of their life, noted the authors.
Despite these statistics, about 90 percent of cancer-related pain could be easily managed, said Russell K. Portenoy, M.D., chairman of the department of pain medicine and palliative care at Beth Israel Medical Center in New York. Barriers to achieving this level of pain management not only revolve around fears about pain-relieving drugs, but are also due to the inadequate training of doctors to detect and relieve pain as well as to managed-care spending limits on needed treatments, explained Portenoy.
Patients in the focus groups described coping with anxiety about anticipated pain and the fear of waking in the middle of the night and not being able to breathe. However, such fears could be reduced through good communication and clear decision-making with their doctors, they said.
Communication is crucial
Situations in which communication wasn't good and clear decisions about care weren't made in advance tended to result in patients and families feeling neglected and health care providers feeling as if they weren't providing good care, said focus group members. Often, decisions that weren't made in advance had to be made in a crisis situation without knowledge of the patients' own preferences about their care.
Researchers also heard stories from focus groups about how health care providers avoided discussing end-of-life issues because the subject made them uncomfortable or they did not want the patient and family members to give up hope.
“Very few medical professionals are comfortable with issues surrounding death,” said Pienta. “We go to medical school to save lives. Terminal care is more about providing comfort care and a good death. We are not trained to do this.”
However, patients and their families tended to fear a bad dying process more than actual death, according to the study. A “bad death” was defined as “lack of opportunity to plan ahead, arrange personal affairs, decrease family burden or say good-bye.” In addition to hoping for a cure, patients and families also hope for a lack of pain throughout the course of their disease and a reasonable quality of life, stated the authors.
More training needed
Programs that would help physicians and other health care professionals talk about dying with patients are usually not a standard part of medical training. “Health care providers need to receive directed training in palliative care, including pain and symptom management and communication skills,” said Steinhauser. “We have such a program at Duke University Medical Center where residents participate in an intensive two-day retreat.”
Staff doctors and specialists in training should be required to rotate through a hospice facility as part of their training, noted Pienta.
People who are trained as palliative specialists will use a team approach to caring for the patient and will consult nurses, social workers, clergy and other care providers, said Portenoy. General doctors can also address end-of-life care by relying on these other care providers, he noted. Palliative care needs to be seen as quality-of-life care throughout the course of the disease and should be integrated into routine cancer care, he said.
Knowing what symptoms to expect
Greater patient and family understanding of what physical and psychological changes occur as death approaches is necessary to help ease the dying process, according to the study.
Particular challenges cancer patients may face include a wasting syndrome that leaves the patient very thin as they die, said Pienta. “This can be a very difficult process for family members to watch,” he said. In addition, because cancer can be a chronic illness, patients will often need to be treated for depression, he said. “Cancer patients also require a lot of pain medication as they reach the end of their lives.”
The researchers also noted the importance of doctors taking the time to discuss advanced directives with their patients. Advanced directives are oral or written instructions for what future medical care patients do and do not want. Unfortunately, doctors rarely talk to patients about advanced directives, said Pienta.
An advanced directive becomes especially important when a patient loses the ability to communicate, said Portenoy. It not only protects the patient's wants and needs as an individual, but also helps guide the doctor through ethical challenges of administering treatment toward the end of life, he explained. “If doctors recognized that this is what an advanced directive is, more would be willing to talk to patients about it,” he noted.
A previous study from Durham Veterans Affairs Medical Center and Duke University showed that the average time devoted to discussions about advanced directives with patients is less than 10 minutes. However, the quality of the discussion didn't appear to be affected by its length, said Steinhauser. “Furthermore, an initial investment of time may improve the physician-patient relationship and save time in future conversations,” she added.
Spiritual needs
Study participants also voiced their concerns about addressing patients' spiritual needs toward the end of life. Resolving conflicts, spending time with family and friends and saying good-bye to loved ones were also important.
Doctors often don't have the office time to adequately address such needs, noted Pienta. “The best thing a physician can do is convince the patient that hospice supportive services should be called into play,” he said.
“Most practitioners don't have skills in assessing spiritual distress,” agreed Portenoy. However, palliative specialists are more attuned to spiritual needs and will build this into their assessment of the patient. Chaplains are usually on hand to help people deal with spirituality during the dying process.
Contributing to others
The researchers also found that letting patients contribute to the well-being of others added to their quality of life. Contributing to others can involve patients giving a meaningful gift to someone or sharing their time, memories and knowledge.
At the end of life patients often reflect on their successes and failures and discover that personal relationships are more important than professional achievements and monetary gains, stated the authors. They are anxious to share this knowledge with others.
Contributing to others may also be applied to the academic setting, noted Portenoy. Most people view patients with advanced medical illness as being too sick to contribute to participate in research trials; however, there might be some patients who would be willing to contribute to the advancement of medicine in this way.
A unique and whole person
Acknowledging that the patient is a unique and whole person can also help ease the dying process, according to the research. Family members seemed to be comforted by health care providers who did not treat their ill loved one like a disease, but understood their values and understood them in the context of their lives.
Health care providers described their personal relationships with patients as contributing to a good dying process. When doctors and other health care providers talk about their own lives and ask the patients about theirs, it helps to enrich their interaction with one another, noted the authors.
It's natural for doctors to bring part of themselves to every interaction they have with patients, said Portenoy. “But I can't say there is a strong sense that doctors recognize this and factor it into these interactions to enhance the experience,” he added.
The role of hospice
The most important step to easing the dying process is enrolling in a hospice where patients can receive the care they need, said Pienta. Doctors, nurses, grief counselors, social workers, spiritual counselors, physical therapists, home health aides and volunteers work together to provide hospice care, which is often given at home.
“Hospice is a unique and wonderful alternative,” said Portenoy, who is a hospice medical director. However, it is an alternative that needs to be fixed, he added.
Unfortunately, patients and families identify hospice with death and not living with illness and having the opportunity to face death well, he said. Although patients are usually referred late and the average length of stay in a hospice is only 25 days, hospices are not intended for just the very end of life, he noted.
If patients don't retain their non-hospice care physician, they aren't as likely to see a doctor as often once they enter hospice, said Portenoy. Sometimes maintaining the continuity of care from hospital to hospice is difficult, he said.
Despite these difficulties, 40 percent of patients go into hospice and usually have a positive experience, he said.
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