Despite the year-long, intensive debate about reforms in health care, we heard next to nothing about hospices. I guess the main reason is that Democrats fear, with good reason, that the mere mention of hospices will give Republicans another opportunity to claim that the reform aims to hasten people's demise. Actually, hospices make the end of life much more humane (and less costly).
All this was driven home to me when Dr. Brian Murphy gave up part of his Sunday to guide me through a visit to Capital Hospice, which serves various parts of the Washington, D.C. metropolitan area. My first mistake was to assume--and I guess I am not the only one to make this mistake--that hospice is an institution, like a hospital or a nursing home. And indeed the place I visited, Halquist Memorial Inpatient Center, in Arlington, Virginia, is such an institution. It is a former schoolhouse that has been converted into a congenial, home-like building, in which about 15 people spend their last days. The focus here is on managing the pain and anxiety of the patients and on helping their families come to terms with the death of their loved ones. This is in contrast to treatment provided by many hospitals in which the staff are seeking to "do procedures" even for those well beyond cure, in part because physicians are dedicated to promoting life and not easing transitions to the next world--and because they are paid per procedure. (Hospices are paid mainly a fixed amount per day, per patient.) At Halquist Memorial, patients get to do all kind of things you would not dream of doing in a hospital: drink booze, have their pets run around, and--I was surprised to see upon entering the facility--spend a very cold day outdoors, smoking! And the patients can have vanilla ice cream any time they want, day and night. I guess no need to worry about your weight here.
The main lesson I learned was that most of the patients who benefit from Capital Hospice services (and other such across the nation) are not in an institution but at home. Capital Hospice serves some 900 dying people at any one point in time, but only a handful are in one of its institutions. Most of the hospice care is provided to people in their homes, including visits by aides, nurses, physicians, social workers and--if acceptable to the patient--by a chaplain, and ultimately a grief counselor.
When I interviewed several physicians in private practices and not part of the hospice--physicians who are often very critical of our health care system--I was surprised to hear them praising Capital Hospice, a not-for-profit body. They said that the staff was very dedicated, often calling them and asking for changes in the medications when those given seem not to alleviate pain or anxiety. The physicians chided a hospital they refused to name that turns patients over to hospice care only when they are on the very last days (sometimes hours), to make it seem that the hospital death rate is low. Earlier referrals would have been much better for the patients, the doctors said. In general, they felt, their colleagues and families are too reluctant to turn to hospice care because doctors feel that sending a patient this way is a sign of failure on their side, and families feel that should not give up hope. But there can be little doubt that from the patients' viewpoint that, when the time is right, hospice care is vastly more humane than any other.
It may well be too late in the day, and politically unwise, to raise this issue in the current round of health care reform. However, in the longer run, all health insurance providers (and not just Medicare and a few private insurers) should provide patients with a hospice option. Patients, their families, and--let's be honest about it--the public till will be better for it.
Amitai Etzioni is a University Professor at The George Washington University and author of The New Golden Rule (Basic Books, 1996).
Another key factor about hospice care we don't want to forget is that the focus of the hospice team is not only the patient but the FAMILY as well. The hospice philospohy recognizes that pain can be experienced physically, emotionally, financially, relationally, spiritually...Hospice sees you as a whole person who exists within a web of relationships.
"Impact of Hospice Care on Survival
Hospice care may prolong the lives of some terminally ill
patients. In a recent study, the mean survival was 29 days
longer for hospice patients than for non-hospice patients.2
In other words, patients who chose hospice care lived an
average of one month longer than similar patients who
did not choose hospice care. Researchers selected 4,493
terminally ill patients with either congestive heart failure
or cancer of the breast, colon, lung, pancreas, or prostate.
They then analyzed the difference in survival periods
between those who received hospice care and those who
did not.
Longer lengths of survival were found in four of the
six disease categories studied. The largest difference in
survival between the hospice and non-hospice cohorts
was observed in congestive heart failure patients where
the mean survival period jumped from 321 days to 402
days."
I wonder how much control the patient has over when to vamoose? I'd love to skip the bedpans, IVs, and hospital gowns.
My grandmother (suffering from incurable lung cancer) had in-home hospice care, where the workers treated her with gentleness, respect, and dignity. They spent time with her, as one human being to another.
My aunt, on the other hand (suffering from ovarian cancer in its final stages, diagnosed too late to do anything), was hospitalized, put through bouts of chemotherapy and finally two horrific surgeries. It was then revealed by the hospital personnel that they knew early on that nothing would do any good. As a result, instead of having the kind of last weeks that my grandmother did, my aunt was (literally) chewed up by the machinery of the hospital and spewed out like an inconsequential thing.
I thank the doctors who realized it was time and I thank the care givers who are making a profound difference for the patients and families.
they would completely fail to understand how much pain and suffering you would be going through. All they have in mind at that time would be to exhaust every means to get you well again even if the situation is hopeless. Physicians cannot decide for you or the family that hospice care would be best
because they don't want to antagonize some family members or give the impression that the situation is hopeless. Most people have a will written long before they die, why not have a directive too ?