An excerpt from Wishes To Die For: A Caregiver’s Guide to Advance Care Directives.
The great poet Rumi ascribes, “I should be suspicious of what I want.” Like many others, as I become older I look forward to Medicare paying for health care expenses. Being enrolled in Medicare makes health care available, yet access to health care does not ensure good health. Eating an apple a day keeps the doctor away, but once people can afford to get sick by having health care, I witness people choosing to see the doctor rather than consuming the healthy option of an organic apple.
The certainty of being right careens into the certainty of being taken for a ride when becoming ill. I stand in suspicion of people who believe they are treated well as I prescribe a multitude of medication and tests that conflict with my sense of living well. Are people becoming more realized as patients and less recognized as people?
Statistically, the older we become, the more likely it is for us to become ill and be hospitalized. Younger patients are more likely to take risks with their heath, making boastful claims of not having seen a doctor in many years. I recently treated a 32-year-old man who had been diagnosed with a hole in his heart septum. Once again he had passed out during sex. He did not have insurance and could not afford medication. However, he seemed content in not taking medication and had been compensating fairly well physically. His comfort level with risk rather than medication suggested something to me about dignity. The ability to take risk along with the certainty of being right may actually be a useful tool in self-restraint.
If what you don’t know won’t hurt you, then what you do know may hurt when certain medical treatments or lifestyle changes become necessary. Generally, younger people tend to be cavalier and offhanded with what they believe they know. They may know that excess sun exposure, sugar intake, and smoking are unhealthy, but frequently prefer not to discontinue these behaviors. Are medical tests necessary to promote and maintain being health conscious? Do we need to know our specific cholesterol level before choosing low-cholesterol foods? Is sun protection a forethought or an afterthought to skin cancer? I believe living life to the fullest allows us to engage in disease prevention behavior balanced with middle-of-the-road indulgence.
For some elderly patients, the go-to plan of advance care directives is to worry themselves sick. They already tend to be fearful of dying and easily become overly focused or fixated on heart attacks and strokes, prompting checking their blood pressures incessantly. Higher readings occur as a consequence.
People often repeat the cliché that it is better to be safe than sorry. This one phrase greatly extends the line of patients waiting to be seen in the emergency department. However, I am not convinced that playing it safe actually supports certainty. The more I dwell on dignity, the stronger I advocate for certainty over worry. By playing it safe, do we attract what we fear? Fear results in anxiety and overthinking, working against reasonable judgment and self-restraint.
Historically, advance care directives have been written from the perspective of attempting to prolong life. I view these documents as catalysts to creating destiny. It is not the occurrence of the stroke or cancer that shapes my future, but how I choose to react to illness. The deeper we plunge, falling head over heels into the health care system, the more difficult it becomes to maintain self-restraint. While I am certain that a majority of patients have preconceived notions of when enough is enough, most rarely decline the extended warranty offered through comprehensive health care. When is it better to be safe in a nursing home than sorry to have ended up there? I believe we need to be suspicious of what we want long before wishing to receive any treatment.
Most advance care directives are formulated to play it safe and are often equated with preservation. I preface safety and preservation with dignity. I view implementing an advance care directive as going out on a limb that may eventually break. The so-called “safety net” easily traps us in a web of complacency. Decisions regarding what we do and do not treat are normally left to health care professionals who assume authority. I suggest maintaining personal authority in these matters.
As an educator, a physician is capable of explaining disease processes and answering questions about potential complications. However, a physician need never be the final word in deciding which options are right for the patient. The doctor can offer further testing and treatment, but cannot be 100 percent certain of providing the absolute right treatment. Patients are encouraged to understand their roles in making treatment decisions personalized.
Doubts that surround death and dying present an opportunity to raise consciousness. Advance care directives become homework assignments for adults. Similarly to a child’s approach to homework, adults might adopt coping strategies utilized when avoiding death and dying, i.e. denial, bargaining, anger, depression and acceptance. Setting aside and avoiding these life and death homework assignments leads to chaos, confusion and contention among family, friends, caregivers and professionals involved in end-of-life care.
There is usually no self-restraint in living life to the fullest when dealing with terminal illness. What distinguishes homework from classwork is when a child works independently. When children are left to their own devices, fear of failure runs rampant, permits an individual to dawdle in denial. Unlike Elisabeth Kübler-Ross, who was sensitive to how individuals cope with each stage of dying at their own pace, my mother advocates, “Don’t put off until tomorrow what can be done today.” Procrastination is averted by creating advance care directives, and that lead to certainty over helplessness by discovering what someone is able to do on their my own.
I remember Dr. Reider from my residency training stating, “What you don’t do will come back to haunt you,” but many other people chose to believe, “What you don’t know won’t hurt you.” Unfortunately, that can come back to haunt them. Death is not necessarily frightening. It is not knowing the hurt, indignation and shackles that might precede death. Fear tightens the screws that make it more difficult to die, particularly when having a hand in it. Loosening the screw in order to let go, I remember my father’s wisdom: “Don’t screw it in so tight; that only makes it harder to get out.”
Kevin Haselhorst is an emergency physician and author of Wishes To Die For: Expanding Upon Doing Less in Advance Care Directives. He can be reached at his self-titled site, Kevin Haselhorst.
Image credit: Shutterstock.com