Lessons in Supportive Care, IX: Preventing the Death of Hospice
April 1, 1998
Special Feature
Lessons in Supportive Care, IX: Preventing the Death of Hospice
By Tom Smith, MD, FACP
Fact: The not-for-profit, no-frills hospice in my rural Ohio hometown contracts to 50% of staff: "Patients just aren't getting referred or are getting referred too late . . . we can't do this anymore."
Fact: The time from hospice referral to death has decreased by about a week . . . and it was 2-3 weeks before. (From many reliable sources involved in the Institute for Healthcare Improvement project to improve end of life care.) Hospices are going broke . . . they just get to know the patient, then they die. And these dying patients use too many resources to be covered by the hospice per-diem benefit.
We are supposed to take care of patients when they die, right? Right. It's the responsibility of the oncologist to follow a patient from diagnosis to death. We expect that oncologists, and others who proclaim excellence in "end-of-life" care, to know how to do it. We also expect them to know when to refer to specialist programs, like hospice.
Why the fuss about the referral time being two (and now one) weeks?
Hospices are true managed care, at least under Medicare. They get a per diem (often about $80) while patients are at home. They get a bigger payment (often about $400/day) for patients in the hospital. That's all. Anything we order gets paid out of that, including CAT scans, radiation, pain medicines, and bereavement counseling. It takes a lot of $80 days to make up for the $2000 bill one of my patients just got charged for his abdomen and pelvis CAT scan.
Hospices look to oncologists for most of their referrals. If we send patients to hospice with a week to live, then hospices can't survive, and that seems to be the trend nationwide. The trend started even before Medicare started auditing hospices to see who lived too long.
Some thoughts for the possible shortening of hospice time: [answer is not known]
· Patients don't want hospice-they want aggressive treatment. We are just providing what is wanted, and we have more options for fifth-line treatments all the time.
· Doctors are afraid of being audited if they refer too soon and the patient lives too long. Possible, but the trend started before the Medicare fuss.
· We don't know when patients are dying or when they want hospice. Most of the evidence suggests we overestimate the survival of our dying patients, but we can always tell who is incurable. The referral time to hospice-about 2-4 weeks-is the same whether or not the country has a rule; we refer, and patients accept, when patients can no longer fulfill their social role.
· We are holding on to our patients longer because we 1) don't want to lose control of people we hold dear; or 2) don't want to lose the revenue. I know that when I send my patients to hospice, my practice revenue goes down. The nurses take care of everything. No office visits, no lab revenues, no infusions . . .
What constitutes good end-of-life care? Can my practice provide it?
So far, it has been in the eyes of the beholder. However, the AMA Institute for Ethics recently released eight elements for quality end of life care.
These require substantial attention to detail for complicated patients. To me, a good analogy is the care of acute leukemia patients. Many offices and physicians are simply not set up to take adequate care of leukemia patients, who often have intense resource and psycho-social needs, as well as requiring hour-to-hour attention to detail in the hospital. In that case, physicians refer those patients to appropriate referral centers.
The same case can be made for referring complicated end-of-life patients to specialist teams, when the office is not set up to provide continuity of care, quick response time for routine pain management, and other types of questions (home care visits when needed, etc.).
Can we use the principles to help us design our care?
Yes. These standards represent achievable goals for an oncology practice. If the practice cannot meet them, similar to meeting the rigorous demands for acute leukemia care, then some educational effort or referral policy may be needed. I recently served on an ASCO task force to improve end-of-life care and made some practical notes for applying these principles in my own practice.
Elements of quality care for patients at the end of life
Please forgive the AMA the "trustworthy assurance" verbiage. They tried hard, and these are good. Plus, if you follow all eight points, you get a free Sunbeam Electric Blanket!
1. The opportunity to discuss and plan end-of-life care.
The only way to address the issue of death is to directly bring it up. Patients should be asked how much they want to know about their illness and prognosis, and then given full information if desired. There is no data that full information either takes away hope or hastens death, and there are excellent resources for how to give bad news (Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore, MD: Johns Hopkins Press; 1992). Both doctors and patients may "burn out" with treatment and neglect these issues (Frank A. At the Will of the Body. Boston, MA: Houghton Mifflin; 1991). I tell my patients to remind me before each treatment to ask if the treatment is helping them. End of life discussions can be done successfully in the office or hospital setting, within the current reimbursement structure (Smith TJ, et al. How long does it take to get a "do not resuscitate" order? J Palliat Care 1997;13:5-8). Patients should be offered the opportunity to make a living will while still able to make decisions.
2. Trustworthy assurance that physical and mental suffering will be carefully attended to and comfort measures intently secured.
More than 50% of hospital inpatients die with needless pain (Cleeland CS, et al. Pain and its treatment in outpatients with metastatic cancer. N Engl J Med 1994;330:592-596). The technology exists to relieve pain and other symptoms in nearly all of our patients-if we use it. Care of the dying prostate cancer patient demands attention to symptom control, management of anxiety and depression, and may require consultation.
3. Trustworthy assurance that preferences for withholding or withdrawing life-sustaining intervention will be honored.
Nationwide, only about 20% of dying patients have advance medical directives. In the SUPPORT study, about half the doctors did not know the preferences of their dying patients (A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments [SUPPORT]: The SUPPORT Principal Investigators. JAMA 1995;274:1591-1598). Knowing and following the preferences of our patients is part of our professional responsibility (Smith TJ, Bodurtha JN. Ethical considerations in oncology: Balancing the interests of patients, oncologists, and society. J Clin Oncol 1995;13:2464-2470).
4. Trustworthy assurance that there will be no abandonment by the physician.
Sometimes patients will continue with active therapy in the mistaken belief that they will be abandoned if they switch to "passive" palliative therapy. In reality, visits are often scheduled around the giving of chemotherapy. Telling patients that one is switching to active management of symptoms rather than active treatment of the cancer, because anti-cancer treatment has not worked, and that you will not abandon the patient, may assuage some of these fears.
5. Trustworthy assurance that dignity will be a priority.
Fear of loss of dignity is the most common reason why physician assisted suicide is requested, not pain or physical suffering. This may be especially important to patients with a long history of independence and new found progressive losses of mobility, self care, and activities of daily living. Directly ask the patient if he or she is having problems with loss of function.
6. Trustworthy assurance that burden to family and others will be minimized.
Patients can be referred to hospice or palliative care services, if the physician office is not set to offer such assistance. The National Cancer Institute Cancer Information Service, 1-800-4CANCER, can provide a list of available local hospices and services. I am afraid that our politicians simply no longer care about home care programs, since the cost is going up and most people are somehow taken care of, but look for more budget cuts.
7. Attention to the personal goals of the dying process.
Most patients will have some personal goals to complete, such as family communications or legacies, a last trip, etc. The only way you will know about an upcoming graduation is to ask. In addition, 70% of patients prefer to die at home, yet less than 20% actually do; the only way to determine preference for place of death is to ask, and then plan for it (Smith TJ. End of life care: Preserving quality and quantity of life in managed care. ASCO Educ Book 1997;33rd Annual Meeting:303-307).
8. Trustworthy assurance that care givers will assist the bereaved through the early stages of mourning and adjustment.
As one family remarked, "When our dog died, the vet at least sent a condolence note; we never did hear from our physician." Simple measures, such as sending a bereavement letter or a phone call, can be immensely rewarding for both the patient and physician.
Those are, like, really easy!
Well, if they are, then we should all do them. But any discussion about someone who has recently died will bring up some horror stories. If you don't believe me, ask three non-medical buddies at church, synagogue, or the gym. None of this is that hard. It just takes time, emotional involvement, and a willingness to make our practice one in which we would want to be.
End of sermon message
We can do this. When we know someone is dying; when a patient has progressive breast cancer, now with the fifth failed therapy, we can plan.
· As difficult as this is to discuss, patients often have definite plans for how they want to live their remaining life when cancer progresses. "Have you thought about how you want the end of life to be?"
· Refer people to hospice when their disease is getting out of control, not when they are on their death bed. "Hospice is a way of helping people be as functional as they can for as long as they can. The goal is not to treat the cancer, because we were not successful in that, but to treat the symptoms. Can I have the hospice people call you?"
If we don't do these things, then it is likely that more hospices will close, and end-of-life care will be worse than it is now.
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