Is quality of life possible during the physical decline of a terminal condition? That’s a question that has surfaced recently, possibly driven in large part by the baby boomer generation of alternative thinkers. The answer seems to be trending toward an affirmative stance. Yes, even people who are dying can infuse their lives with meaningful moments… possibly more so if they are detached from institutions where they could easily become tube-entangled in the mechanical ministrations that represent the bastion of the medical model.
Though multiple surveys have indicated that a large proportion of people choose not to die in a hospital, among the majority of the population that is actually the place where lives end. Recognizing this reality, the literature these days is rife with rationales for eschewing a hospital environment during one’s final weeks or days. Activists are reacting negatively to the scenarios that are borne of scientific advancements, yet are potentially aversive to patients and their families.
Perhaps of particular note is that medical doctors don’t want to die in hospitals, either. Though they are fully aware of all the mechanical and pharmacological means of bodily support, many say “no thank you” to the prospect for themselves. One of them, Atul Gawande, has become a maverick of sorts in spreading the word about the contrasts between hearth or hospice and conventional hospital care.
In an article for the New Yorker Magazine, he referenced a study done as part of a Coping With Cancer Project. “… terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place.” Furthermore, he notes, “as for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence.”
Caring professionals in hospital environments humanely deliver treatments with utmost compassion. They respond empathetically to family members who are unable to acknowledge finality and let their loved ones go. Medical personnel are geared toward saving lives and attempting to extend them by employing all possible means, such as surgeries or potent chemotherapies (that invariably cause debilitating side effects). At the hands of their zealous efforts, though, often the patients feel worse. Devices, feeding tubes, dialysis catheters, tracheotomies, and the like can virtually imprison the person who is tethered to tubes and pumps, drifting in and out of consciousness. The last days or weeks of life may be exponentially arduous for afflicted individuals, while families can become overwhelmingly distraught by the ramifications of intrusive treatments. A waning life may be tainted by drug-induced oblivion coupled with the procedures and equipment that render a zombie-like existence, in spite of the fact that there is no hope for reversal or arrest of the disease process. The soaring cost of care for the terminally ill is yet another consideration compounding the hardship of such situations.
Through interviews and experiences with patients, Doctor Gawande has accumulated evidence that dying individuals have needs beyond just extending the number of days they continue to exist. Surveys of folks with terminal illnesses have identified their priorities, which include prevention of suffering, time with family members, physical touching of others, mental acuity and awareness, and avoidance of being a burden.
Pain relief and other palliative measures can be provided in hospice or home settings, without the complexities of counterproductive paraphernalia geared toward prolonging a life destined for an imminent ending. Comfort care rather than curative treatments may include massages and other hands-on interactions that involve touch. Soothing music may be part of the picture. The familiar atmosphere of one’s home in itself may contribute to alleviation of distress. If food is still able to be eaten, choices can be customized according to appetite and tolerance. Contacts with friends and family members are more natural and unimpeded, in a place that’s conducive to supporting one another. Once death has occurred, there is no rush to remove the body from the premises, allowing time for continued contact and spontaneous expressions that might not be possible in an institution.
In his popular book, Being Mortal, Doctor Gawande elucidates what matters most to people who are dying. His own father proclaimed that he wanted to continue his social life rather than have aggressive treatments that would deprive him of being social. Another man said he would be okay as long as he could eat chocolate ice cream and watch football. These declarations, then, served as guidelines for their final stages of life. Everyone was aware of the objectives and the need to avoid an institutionalized experience.
Until recently, physicians in general had assumed a skittish posture relative to enlightening their patients about the reality of their ominous circumstances. No one, perhaps especially these providers, wants to admit defeat. No one wants to alert folks to the fact that they have reached a dead end on their road of life. Everyone likely feels the excruciating pangs of destiny.
Increasingly, however, initiatives to discuss end-of-life wishes are emerging. Within the medical profession, practitioners are being trained and encouraged to have such discussions with terminally ill patients. There is a drive to reject knee-jerk treatment methodology in favor of finding out from each individual what matters most to that particular person.
The “Gawande approach” entails posing five questions as elements of routine end-of-life discussions: 1. What is your understanding of where you are and of your illness? 2. What are your fears or worries about the future? 3. What are your goals and priorities? 4. What outcomes are unacceptable to you? What are you willing to sacrifice or not to sacrifice?
5. Upon reaching your final phase, what would a good day look like?
5. Upon reaching your final phase, what would a good day look like?
So the question seemingly boils down to whether someone would opt for a dying experience that is primarily “medicalized” or humanized. Maybe the pendulum is swinging toward a better way to go gently into the good night.
