It's an incontrovertible fact of life: We all die. I do not believe there is such a thing as a "good" or a "bad" death. I know, however, there is a spectrum in the process of dying. It ranges from unbearable suffering for patients and their families to a reasonable quality of life in which symptoms are controlled until the end. Either way, survivors are left to grieve. The latter approach, though, often is embraced by families as an acceptable, and perhaps optimal, outcome.
I have experienced extremes in the deaths of my own parents and those of my in-laws. My father languished in a hospital for a month after cardiac surgery, hooked up to a respirator, feeding tubes, catheters and a myriad of IVs, as a surgeon offered unstinting hope and encouragement until my family requested the end to this futile care. My mother, whose health declined while she shuttled in and out of the hospital, collapsed at home from a pulmonary embolus -- a blockage of an artery in her lungs. Although she had prepared an "advanced care directive" that detailed her wish that she not receive heroic treatment, her caregiver panicked and called paramedics. Though my sister protested in person and I called to underscore our mother's wishes, the paramedics proceeded to resuscitate her, because the advanced directive could not be found in time. She never regained consciousness and lived five days longer, including several after we withdrew life support.
In contrast, my mother-in-law, with severe Parkinson's disease, spent her last days at home with fulltime caregivers. She died peacefully in her sleep surrounded by family. My father-in-law, a nonsmoker with terminal lung cancer, died at home, pain-free and comfortable with caregivers and hospice services, again surrounded by his immediate family.
These experiences, along with those gleaned from years of caring for patients and chairing one of my institution's committees that aims to improve the care of patients with terminal illnesses have brought home this hard truth: As a nation, we must do a better job at providing end of life care.
Let's start with a few facts. We spend a third of all our healthcare resources in the last year of life, with a large chunk of those sums expended in the last month of life; many of the costs go for futile, life-sustaining treatments, such as mechanical ventilation, dialysis, feeding tubes and cardiopulmonary resuscitation.
Too many patients with advanced cancer receive useless chemotherapy in their last week of life. Too many patients with terminal disease die in the intensive care or other hospital units; too few are offered palliative care or hospice services.
When patients and families do tap these services, they tend to be sought very late in the course of illness, often too late to offer meaningful benefit.
National data also show there are great variations whether patients die at home or in the hospital and what kinds of services are offered to the terminally ill. Some of this variation relates to the number of doctors and hospital beds in a community -- the more of these, the greater the likelihood that a patient will die in the hospital. Other factors include: physician practice patterns in the community; the physician's acceptance that a patient's death is not a failure; the expectations of the patient; the patient's race and ethnicity; whether patients and their physicians have discussed end of life wishes; financial issues; and access to hospice or palliative care services.
When patients with serious, life-threatening illnesses are asked what was most important to them about quality of life as death approaches, studies show their responses may be classified into five areas: they want adequate pain and symptom management; they hope to avoid an inappropriate prolonging of death; they wish for a sense of control; they would like to relieve any burden they might put on others; and they would like to strengthen their relationships with loved ones.
We have approaches and resources available, if we would use them, that could improve what happens with patients, families and caregivers now.
Talk to your doctor, fill out key forms
When a patient with a newly diagnosed disease -- prostate cancer, for example -- sees his physician, ideally there will be a discussion of the pros and cons of various treatments, including evidence-based results of surgery, radiation, hormone therapy or active surveillance. Armed with this information, patient and physician then embark on a course of action.
Why, then, should patients be deprived of the same type of conversation about their goals and desires at the end of life? If it doesn't occur, family and physicians will be forced to make arduous decisions about the use of ventilators, cardiopulmonary resuscitation and other life-sustaining treatments based on incomplete knowledge of what gravely ill patients actually want. A recent survey by the California HealthCare Foundation found that almost 80% of Californians want to discuss end-of-life care with their doctors but less than 10% actually do so. The time for that crucial conversation must come, of course, well before patients become too ill to make rational decisions. In a recent publication, the American Society of Clinical Oncology recommended that for patients with a severe, life-threatening illness such as advanced cancer, there should be a frank discussion of prognosis, including a reasonable projection of survival and curability and explicit discussion of the medically appropriate goals of treatment. The experts also advocate use of a standardized symptom assessment tool, with symptom management based on its answers; screening to gauge distress; psychosocial assessment and support; and involvement of hospice services early in the remaining lifetime of a patient.
Unfortunately, these types of discussions got a bad rap during the 2009 healthcare reform debate. The original bill had a provision to reimburse doctors for time spent in these discussions, which can consume a considerable amount of a work day. Once politician Sarah Palin and others raised the specter that this would result in "death panels," with a group of Dr. Kevorkians plotting to end people's lives, this provision, unfortunately, was cut from the bill. Despite the daunting demagoguery, more physicians are engaging in these essential discussions with their patients.
Besides this conversation with their physicians, patients should prepare advanced directives. These include: a living will that indicates what limits the patient wants to place on treatments at the end of life; and a Durable Power of Attorney for Healthcare that identifies the individual who will make healthcare decisions if the patient cannot. Ideally, patients also will fill out a POLST (Physician Order for Life Sustaining Treatments), a form stating the types of life-sustaining treatment they want or don't; it also lets them specify if they want full treatment, for how long and under what circumstances. This document is signed by the physician, and, in essence, becomes an order that all medical personnel, including paramedics, must follow.
(For details about these critical documents, you may wish to talk with your physician or lawyer or consult further information on: advance directives and more information from the state of California here and here; durable power of attorney for healthcare; and the POLST).
Palliative care and hospice
Let's also be clear about common misperception about a type of treatment known as palliative care. Many believe it is only for terminally ill patients with six months or less to live. That's not totally correct. Palliative care provides relief of symptoms such as pain, nausea, depression, as well as other ills and provides support for patients and their families. It is a useful adjunct for treatment of a variety of chronic disorders, including cancer and congestive heart failure, at any stage of the illnesses. It may be offered at a time when potentially curative treatments are being given.
In contrast, hospice care is provided to the terminally ill with an anticipated life expectancy of less than six months and when treatment with a curative intent is no longer indicated. In this setting, hospice care provides symptom relief to improve the patient's quality of life. It is usually provided in the patient's home. As noted, the Association of Clinical Oncologists recommends early interaction with a Palliative Care team, which, in the case of a form of advanced lung cancer, actually has been found to slightly increase life expectancy, along with the quality of the patient's remaining life.
One of the major goals of American medicine should be more frequent and earlier use of palliative care and hospice services. This, together with a greater use of advanced directives, POLST forms and having difficult but crucial end of life discussions between patients and physicians, will go a long way toward eliminating costly, inappropriate, unnecessary and ineffective (i.e. futile) care at the end of life. I hope this will allow patients the better end that my in-laws experienced, rather than what happened with my parents.