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Dr. Terry is professor of Medicine, Division of Pulmonary and Critical Care Medicine and the Bioethics Institute of Johns Hopkins University.
Correspondence to: Peter B. Terry, MD, FCCP, The Johns Hopkins Hospital, Blalock 910, Division of Pulmonary and Critical Care Medicine, 600 North Wolf St, Baltimore, MD 21207; e-mail: pterry{at}welch.jhu.edu
In that portion of the Hippocratic Corpus called the "Art," physicians were warned not to treat patients "who are overmastered by their disease" at the end of life, realizing that in most cases medicine was powerless.1 In the pre-Socratic era, before the discovery of hemlock, euthanasia meant psychologically preparing a dying patient for a good death because there were no medications to alleviate physical pain or painlessly end life. Times have changed. The scientific advances of the last 2,000 years have not only given us a rational understanding of how to treat the physical suffering of the dying, but have changed our attitude about involvement in the dying process. That medicine has become more actively involved in the dying process can be seen not only in our changed notion of euthanasia, which now implies active participation in patients’ deaths, but also in the hospice and palliative-care movements.
Hospice, from the Latin hospitium, literally means a guest house.2 Hospices > 1,500 years ago were havens for travelers, the poor, and the sick. In early medieval times, the term began to be applied only to a place where travelers rested on their journey. They were often built in impassable and uninhabited areas such as mountain passes.
Like euthanasia, the meaning of hospice has changed. It is no longer a place of refuge for the traveler, but rather a form of care intended to comfort the dying and their loved ones. Hospice care can be given at home, the place where most patients wish to die, or it can be given in a specialized care facility. As noted in this issue of CHEST (see page 220), there are now > 3,000 accredited hospices in the United States caring for > 500,000 patients a year. Most hospices are run by nonprofit organizations, but that is changing.
Hospice is a response to the advances of civilization. In prior centuries, we died unexpectedly and at a younger age, often from infectious diseases. In our modern era, only about 10% of us die suddenly, while most will die from a life-threatening disease after either a prolonged period of deterioration with a short "terminal" phase, eg, lung cancer, or a slow decline periodically associated with life-threatening crises, eg, COPD.3
The demographics of hospice sites and users are not surprising. Most hospice care is given in the home (78%).4 Fifty-five percent of hospice users are women, and most are > 65 years old, white, married or widowed, and have a caregiver.5 As it has probably been for all time, end-of-life decision making and the burden of caring for hospice patients falls largely on women.4 5 Dying men tend to have their wives caring for them, while dying women are more likely to be cared for by a child or child-in-law. The presumed reason for this difference is that many husbands precede their wives in death. Not everyone who enters a hospice program stays in it until death. Almost 20% are discharged from their initial hospice program for reasons that range from transfer to another hospice program to a return to live with family or nonfamily loved ones.4
From a disease perspective, cancer is the most common admitting diagnosis to hospice, while the most common nonneoplastic diagnosis is heart disease.4 Patients with lung diseases are second only to patients with circulatory diseases in the nonneoplastic category. If we add patients with pulmonary cancers and COPD together, they represent approximately 20% of hospice patients.4 Considering that noncancerous lung diseases are the fourth most common cause of death, it is surprising that more isn’t written about hospice and these lung diseases.
The lung cancer patient and end-stage COPD patient differ dramatically in the minds of chest physicians, nurses, and therapists when thinking about end-of-life care. The lung cancer patient’s last few months of life generally follow a relentless, predictable downhill course, with most caregivers conscientiously referring their patient to a home hospice program in a timely manner.
In contrast, physicians have a much harder time predicting the nearness of death of the severe COPD patient. In the Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment, just 2 days before the deaths of their COPD patients, the physicians estimated a > 40% chance that their patients would live > 6 months.6 This prediction occurred while the patients were hospitalized. In another part of the same study, using extremely narrow inclusion criteria for predicting that the patients would die within 6 months of their date of assessment (a Health Care Financing Administration [HCFA] criteria for hospice admittance), approximately 50% outlived the prediction.7 It is this unpredictability that makes chest physicians reluctant to recommend hospice for COPD patients.
It seems that there are only two outcomes to the present dilemma of not being able to predict which noncancer, end-stage lung disease patients should be admitted to hospice. The first is that we eventually develop criteria that more accurately predict death in patients with COPD and interstitial lung diseases. Should this occur, physicians’ comfort levels with sending these patients to hospice would rise along with the number of referrals. Present criteria are largely, but not exclusively, based upon scientific measurements of lung function that, as previously noted, have not proven particularly accurate. In this issue of CHEST, Abrahm and Hansen-Flaschen propose three new criteria based less on physiologic measurements and more on responses to theraputic trials and quality of life. They deserve serious consideration.
If adequate predictors of death within 6 months cannot be found for these patients and others who confound predictions, eg, dementia, then HCFA will have to either accept the fallibility of physician judgment and reimburse hospice programs for longer than expected care, or limit care.8 It is fashionable at this point in an editorial (the mention of financing health care) to raise the specter of limiting resources to care for patients. While it is true that Medicare already sets a cap on the amount that it will pay per patient per year for hospice care, it is unlikely that a federal agency would ever systematically terminate care to dying patients already in hospice programs because they outlived their expected life span. Society would not tolerate such insensitivity, nor should it. Rather, it is the hospice programs that take the financial risk by accepting Medicare funding and trying to live within their budgetary constraints.
The early hospice was a refuge for the traveler through unknown lands. At the end of our lives, we will all make such a journey. It is our task as physicians to try to understand when to tell our patients that it is time to begin their journey, and then to be their faithful companions.
References
This article has been cited by other articles:
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  I. Epstein, J. Stinson, and B. Stevens The Effects of Camp on Health-Related Quality of Life in Children With Chronic Illnesses: A Review of the Literature Journal of Pediatric Oncology Nursing, March 1, 2005; 22(2): 89 - 103. [Abstract] [PDF]
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