Your quality program isn’t complete without end-of-life, palliative care
At the least, pain relief to chronic sufferers can improve
End-of-life care doesn’t make regular appearances on quality improvement agendas, but it needs to show up more often than it does. Gloomy thought? Not exactly, when you consider how many health care consumers are older than age 85, or have AIDS. Or when you listen to the stories of suffering inflicted by futile attempts to prolong waning lives.
At best, only 20% of Americans spend their last days in hospice care, which ministers to the needs of the dying and their loved ones, notes Ira Byock, MD, founder, principal investigator, and president of the Missoula (MT) Demonstration Project. The project is dedicated to the research and transformation of end-of-life experience in Missoula and is a prototype for community-based care. In a recent article in the Journal of Palliative Medicine, Byock writes that median lengths of stay in hospices decreased to two to three weeks nationally.1
However, "if we needed permission to conduct end-of-life care the way it is currently practiced — where pain and symptoms are inadequately managed, for example — we couldn’t get it. Hardly anyone would approve of the status quo," he says.
Is cost the barrier? Byock says he doesn’t think so. "But our reimbursement structure is toward life-prolonging care." When you compare hospice to the often-futile intensive care, extended chemotherapy, ambulance rides to the emergency room, or MRIs that typify many patients’ last days, he argues, "comprehensive end-of-life care would be extremely cost-effective."
Samira Beckwith, president of Hope Hospice and Palliative Care in Fort Myers, FL, concurs. "In hospice, we keep people at home as much as possible and help the family care for the person so they supplement professional care."
Kate O’Malley, director of San Francisco’s On Lok Senior Health Services, links low utilization of hospice care to fragmentation in our present health care system. For example, look at the typical management of a congestive heart failure patient, O’Malley says. The cardiologist refers the person to home care and maybe social work. "Then a crisis comes up. The daughter flies in from out of town and orders providers to do everything possible. Nobody has had a chance to sit down with the family and explain other options."
In leading palliative and hospice care programs, other options include intensive pain management to afford relative comfort for the dying, and quality of time among the circle of loved ones.
Differences with hospice and comfort care
Good end-of-life care entails at least the elements found in hospice programs. Byock, author of Dying Well (Putnam/Riverhead 1998), describes the essentials:
1. Attention to understanding the patient’s wishes and acquaintance with the legal surrogates.
2. Recognition of the patient and his or her family as the unit of care.
"Family" is whoever the patient regards as significant in his or her life.
3. Appropriate pain and symptom management to ensure relative comfort.
4. Care by an interdisciplinary team consisting of a physician, nurse, aides, social worker, physical or respiratory therapist, clergy person, and trained volunteers.
5. Acknowledgement of the person’s inner life, either in religious terms or with other sources of meaning or purpose in his or her life.
"These can be as diverse as a relationship with God or a connection with nature or the person’s children or grandchildren," Byock says.
6. Bereavement support for the family in the initial months following the death.
"This should include screening for the complications of grief [such as clinical depression]," he says. "After weeks or months of involvement with caregivers, families report that they feel strange if they never hear from them again. Sometimes they say just a letter means a great deal."
Going beyond the gold standard
While hospice is the gold standard, palliative or comfort care goes beyond to embrace more conditions than the narrowly defined hospice care in which a disease has a predictable trajectory. Palliative care lifts dying out of the realm of medicine and puts it back into the realm of life events.
"It’s like birthing," Beckwith observes. "For a while, we treated it as a medical event, and now it’s no longer a medical event. Death is not joyful like birth, but it still should be a community event, a transition for the person who’s dying and for the loved ones who survive."
Traditional hospice programs have a strong association with incurable disease in its final stages. That’s a barrier to providers as well as consumers. Very few people can acknowledge that they are dying before they have lost the ability to use their remaining time meaningfully. Comfort care can help people with incurable chronic conditions before the illness progresses to the final stages.
The gradual shift toward self-direction in consumer health care choices bodes a wider use of comfort care for advanced chronic diseases. "In palliative care, we’ve started to talk with people about the fact their diseases cannot be cured and we tell them the focus of the interventions are to provide comfort. Instead of talking about giving them more days of life, we explain that comfort care can give them more life for each day," Beckwith says.
Many people who are finally referred to hospice get there too late to derive the benefits, O’Malley says. If people come later than two weeks before death, neither they nor their families have time to develop relationships with counselors and complete unfinished emotional or spiritual business.
Providers also benefit from thinking about care outcomes rather than time left to live — and who can predict that with any certainty? Where it’s difficult to tell a patient she has three weeks left to live, it’s easier to explain that, instead of curing the disease, the purpose of care is to reduce the ravages of pain and symptoms and thus help the patient live as fully as possible.
In Beckwith’s view, one way to protect providers and consumers from futile and painful interventions that often typify terminal care is to teach consumers about their options. She does her part by making frequent guest speaker appearances at civic groups. She reminds consumers that they can initiate frank conversations with their providers about the natural course of chronic illnesses, and discuss the option of comfort care.
Extending the benefits of comfort care
Many incurable diseases have a longer or less predictable trajectory than cancer. That’s why On Lok now offers comfort care to sufferers of chronic illnesses including congestive heart failure, chronic obstructive pulmonary disease, kidney failure, and Parkinson’s. (On Lok, translated loosely as "a place of peace," refers to a comprehensive set of community-based services for frail elders.)
O’Malley notes that dementia and Alzheimer’s disease are also incurable diseases and, in the advanced stages, people are so dependent on human help that On Lok also extends comfort care to them and their families (For details of how On Lok Senior Health Services has increased referrals into comfort care, see related story "On Lok improves its model end-of-life care," p. 32.)
Promises we can keep to patients, families
One distinct element of comfort care is the contracts providers make with patients and their families. Honoring such contracts or promises constitute the outcomes by which comfort care measures its quality and patient satisfaction.
Symptom and pain management is right at the top of consumer concerns — and provider failings. From his research, Byock notes that in hospital and outpatient settings, families report that their loved ones were in pain too much of the time before death. "But in palliative care, families are satisfied. We tell families and patients that we will respond within a certain length of time when they tell us they need pain relief."
Beyond pain management, comfort care promises family involvement in the care and nurturing process. Providers communicate with the patient’s loved ones, and with each other, sparing patients and families from the aggravation of having to repeat the same information time after time.
The promise of coordinated care protects consumers and providers from service duplications or gaps, such as a missing order for a needed medication or scheduling a family conference when one or two relatives are at work. Comfort care promises people their choice of care settings, which is at home in most cases.
"Another part of promise keeping," Beckwith adds, "is to forget about what we can’t do and look at what we can do to fulfill our people’s individual desires."
For instance, nobody can promise a patient she’ll live to see the new grandchild who is on the way or attend a grandson’s high school graduation. However, Beckwith’s staff did arrange an ultrasound in which a grandmother could see her grandbaby in utero, and an early mini-graduation where another patient watched her robed grandson receive a provisional diploma.
Reference
1. Byock I. Hospice and palliative care: A parting of ways or a path to the future? J Palliative Medicine 1998; (1)2:165-176.
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