The Tao of Departing: How Hospice is Transforming Medical Care, Part 1
by William R. Nesbitt
A 94-year-old man with end-stage congestive heart failure who was on life support in the ICU has gone into cardiac arrest and is undergoing CPR. The family insisted he be a full code (in which doctors respond with interventions any time the patient's breathing or heartbeat stops), since “just two weeks ago he was driving and living on his own." An 86-year-old woman with end stage Alzheimer’s disease has shriveled to 79 pounds, and is lying in a nursing home mute, with contracted spindly limbs, wincing and moaning in pain every time she is turned. The family wants a feeding tube placed because of her poor intake. “We can’t just let her die of starvation.” A 57-year-old man with pancreatic cancer spread to his spine, liver, lungs, and brain is being wheeled into the cancer center; his bright yellow skin stretched over his skeletal frame. The family has enrolled him in an experimental protocol because, “What do you expect us to do? Just give up and let him die? Where there’s life there’s hope.”
With all of the advances in western medicine our society has all but banished death from being a part of our culture. Whatever is wrong with you should be able to be diagnosed by an MRI and treated with a laser. Preventive health practices and better management of chronic illness have made it so that if you reach 65 years of age, statistically you should be able to live into your eighties. We now can assess disease with electron microscopes, functional MRIs, PET scans, and innumerable blood and body fluid tests. Gene therapy, immunotherapy, and nanotechnology promise future cures beyond what we could hope from pharmacologic advances alone.
Sensational media reports of medical breakthroughs have raised our expectations of how we can repair just about any breakdown in the biochemical machines we call our bodies. “Disease” is public enemy number one. It steals our years and compromises our quality of life. We seem to accept just about any treatment or procedure that will keep our machine functioning. Accepting that death is inevitable is just not an option in our modern culture. This is not only true for the lay community but it is also the widespread feeling in the medical community as well.
The odds are overwhelming that if you go to your doctor, he or she will focus on what is malfunctioning in your body and you will likely receive a prescription to correct the misbehaving physiology. Failures of the body to respond to treatment often bring about frustration in the clinician. The treatments begin with the drug likely to do the most good and cause the least harm. When responses are not meeting expectations, higher doses, or different or additional drugs are prescribed. If the disease fails to respond and the patient continues to decline, riskier and more complicated therapies are often used. But, ultimately the patient, every patient, will die.
A patient’s death is often met by the doctor with a sense of failure, despite the inevitability of the course of the disease. “What more could I have done?” This fear of failure frequently motivates physicians to order tests and treatments even in a patient with a poor prognosis. What compounds the problem is that most physicians are very poor at assessing prognosis. Studies show the average physician will overestimate a patient’s life expectancy by a factor of three.
Fortunately, in the past few years, there has been a shift in focus in medical care for those nearing the end of life. Instead of primarily focusing on the patient’s “disease,” a new class of doctors, hospice, and palliative care specialists are trying more to focus on the patient’s “illness,” which is the patient’s experience of his or her disease. This more patient-centered approach (rather than the traditional disease-centered approach) incorporates the inevitability of universal mortality into the larger context of the patient’s overall care plan. More importantly, this approach incorporates most patients’ natural and intuitive understanding of their own approaching departure from this realm of existence. This capitulation to such universal exigencies can dramatically reduce suffering, increase quality of life, and in many cases increase quantity of life as well.
It is ironic that probably this most significant advance in twenty-first century medicine is from re-discovering philosophical principles from 2500 years ago. It was then that Lao Tzu wrote the Tao Te Ching. The book’s general theme is that there is a “tao,” or “way,” of the universe. Struggling against the way things are, against the realities of the universe, creates disharmony and suffering. By yielding to these principles, everything seems to go more smoothly, more easily, and with much less effort and anxiety. Much of the time goals are achieved not by “doing” things, but rather by “not doing” things. Hospice care is based around such principles. Embracing the reality that dying is as natural as being born sets the stage for compassionate assistance in a person’s final transition from life.
Eligibility for hospice is achieved when a patient’s prognosis is for less than six months survival if the illness runs its normal course. Patients with terminal conditions are interviewed by members of the hospice team to help them determine their goals of care, rather than continue to attack the disease at whatever cost to the patient and the patient’s quality of life. Most of the time a patient has the sense that he or she is dying, often before the physician is willing to admit it. These patients find that they would rather reprioritize their lives and prefer to live out the rest of their lives in comfort at home with their families rather than going back and forth to the hospital, consuming their precious last days with futile treatments and unnecessary tests.
When the patient elects hospice his or her care is managed by the hospice interdisciplinary team (IDT), which consists of a nurse, a physician, a social worker, a chaplain, and a home health aid. The patient’s primary physician may direct the care or turn over the care to the hospice medical director who is usually more skilled and qualified at dealing with difficult issues of end of life medical management. The goal is to help the family or other caregivers to learn to provide end of life care for the patient at home or in any facility where the patient resides. Should symptoms such as pain, shortness of breath, nausea or agitation require prolonged direct supervision by the nurse, the patient can be put on “continuous care” status until symptoms are again manageable by the family or facility. If symptoms are too severe to be managed at home the patient can be put on “general in-patient” status either in the hospital or a skilled nursing facility, where medications can be rapidly adjusted under close medical supervision and yet remain under the care of the hospice team. If the family needs a break either due to being overwhelmed by care-giving or a need to attend to urgent matters out of town, the patient may be admitted to a skilled nursing facility for up to five days under “respite care.”
Medicare pays the hospice organization a per diem rate, based on the levels of care, as mentioned above, for all care and medications related to the patient’s terminal diagnosis. Medicaid and many private insurances make similar arrangements with the hospice. Medicare does not pay for nursing home stays for hospice patients except for the days the patient is at a skilled nursing facility on general in-patient status or respite status. However, Medicaid can cover long term nursing home stays. Patients can revoke hospice services at any time if they change their minds and wish to pursue aggressive/curative care. Patients can be discharged from hospice if their condition (and therefore their prognosis) improves. There is much more about the financial and regulatory aspects of hospice, beyond the scope of this article, which can be obtained on the internet or from a local hospice organization.
Under hospice, comfort and quality of life replace function and cure as the primary goals. However, the team tries as much as possible to let the patient determine their desired balance between alertness vs. sedation. Working with the patient’s primary physician, the patient’s medication regimen is simplified as much as possible. Preventive medications such as cholesterol meds, blood thinners, and vitamins are usually discontinued. As the patient’s general condition deteriorates, all medications except comfort medications are discontinued. Ironically, in many cases, some patients improve dramatically once all their medications have been stopped, as it was side-effects and interactions of the medications they were taking (literally sometimes dozens of different drugs) that were actually responsible for their decline. Hospice comfort medications are formulated so that in most cases they can still be administered without IVs or injections even to the patients who can no longer swallow or are no longer conscious.
The team also addresses misconceptions that patients may have regarding medications, especially regarding narcotics. Fears regarding addiction, over-sedation, suppressing breathing, or hastening death are largely unfounded according to the latest research. Opiate narcotics are generally very safe at the prescribed doses. There are few side-effects or drug interactions, and true allergic reactions to narcotics are rare. In many cases patients can actually become much more functional when their pain is adequately controlled.
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