‘The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.’ — Mark Twain (1835-1910)
Editor-In-Chief, Chester “Trip” Buckenmaier III, MD, COL (ret.), MC, USA
New Year’s Eve 2023 was marked with sadness for my family as my mother-in-law, Susan “Sue” Timperley, passed. Leave it to Sue to pass with fireworks and parties in full swing. She was a vital force within our family, a calming influence on the males of our clan, an example for all and a tireless advocate for her grandchildren. Although she was just a slip of a woman, 5 feet tall and 100 pounds soaking wet, woe to anyone who would mistakenly assume her petite physical appearance belied weakness of character. Her capacity to express love seemed boundless. She was one of the few people in my life that I strived not to disappoint nor cross. In our family, Sue’s opinion of you mattered and was usually a good gauge apropos of how you were generally doing in life. In success, her praise was effusive; cross her family, and her stare could wound you without her lifting a finger. It is said, if you want to understand your wife in later years, study her mother. I apparently married well above my station. Sue’s approach to living never disappointed. She set a standard worth emulating, and I loved the woman.
Sue’s health declined precipitously during the final months of 2023 as she struggled with pulmonary hypertension. Our family gathered around her during Thanksgiving, and— despite her constant struggle to breathe—she was the center of light that we all orbited. She became increasingly fatigued following that visit, eventually ending up in the hospital. Pam and I, as medical professionals, provide family guidance and support when health issues arise. We traveled to help her husband, Bruce, with her care and transition back home. To the shock of many in our family, her excellent hospital caretakers and our friends, Pam and I recommended hospice care.
Erroneously, when people learn that someone has been accepted into hospice, the assumption usually is the patient has no hope, will soon be dead, and the patient’s family and care professionals have given up. Pam and I know, after 30-plus years of working in healthcare, that these reactions to the idea of hospice care are born of systemic misunderstanding regarding death and dying within our society. It is unfathomable to me that the one issue all humans (all life on the planet, for that matter) must face equally—death—is not discussed in schools, not taught in medical schools and patently avoided around the family dinner table. I was, therefore, not surprised when our initial discussion with people regarding hospice care for Sue was met with resistance and some dismay. Why would you not want to give Sue every chance? She’ll get over this episode. She’s not there yet. These were common threads and reactions among many within Sue’s orbit.
Hospice is not about giving up or limiting care. On the contrary, it is about enhancing access to medical resources to not just preserve life but also focus on the quality of life. I have spent a lifetime working in hospitals. These institutions are the finest expressions of human nobility and technological prowess. That said, I would not wish a hospital death on anyone (most notably myself). It is a sad reality that, for many people, most of the healthcare dollars spent in their lifetime will likely be consumed in the last months of their life, lingering in a hospital. Our technology provides an incredible capability to preserve the physical properties necessary for life but too often without regard to the quality of that existence. Hospitals are excellent places to go to deal with trauma or disease, but, like the society they serve, hospitals do not do death well. Like any decision that significantly impacts our existence, one must prepare for a quality death. Often, people will agonize and plan for months over life decisions such as marriage, buying a house, purchasing a car or taking a vacation. Ask most folks what they have planned for their death, and you are usually rewarded with an aghast stare. I find this perplexing, because the previous life choices I mentioned are not guaranteed. Everyone eventually will be compelled to accept the journey of death (along with taxes). I have personally witnessed too many patients experiencing the last days of their reality slaved to a machine, drugged into oblivion and family only available during visiting hours.
To her credit, Sue allowed Pam and me to discuss hospice care early with her and the family. Our goal was to put the support in place, not only for her but for Bruce and her children. Together, we had some challenging and, at times, difficult discussions regarding Sue’s disease and her eventual death. Her bravery regarding this topic was perhaps one of the greatest gifts she gave her family in the end. Because we contacted hospice early, we brought all the necessary care resources into Sue and Bruce’s home. Sue could spend her final days in her own environment, on her own terms, with her family nearby. Family members could also turn their attention to other responsibilities, confident in the knowledge that hospice was there for Sue and Bruce to lean on. Finally, if such a thing as angels on Earth exist, they must all work for hospice. I have never met a hospice professional with whom I was not thoroughly impressed.
Because of Sue’s strength in life, when her death came faster than we or her physician expected, we were spared further trauma. Sue expired peacefully in her husband’s arms. When the ambulance came, we were able to prevent the trauma of a pointless resuscitation or an unnecessary trip to the hospital. Hospice proved as helpful in death as they were in life by easing the weight of Sue’s loss through arrangements for her body. This support allowed Sue to die as she lived, with quiet strength and regal dignity. Our family was gifted with the time to focus on her memory rather than sterile hospital rules and cold machines.
It is said that death is light as a feather for the deceased but heavy as a mountain for those left behind. Our family has not been spared the mountain with the passing of such a matriarchal figure. Nevertheless, as hard as this experience has been, I believe Sue’s approach to her death can be instructive. As healthcare providers, we should not shy from prompting our patients to give as much attention to how they wish to leave this world as they would give the purchase of an automobile. Providers should educate themselves about the true nature and advantages of hospice care. Furthermore, we cannot be demure regarding our patients’ questions regarding death and dying. As Mr. Twain reminds us, a provider able to fearlessly discuss death has an understanding of life that is worthy of a healthcare professional.
