I was the “stranger” at my father’s bedside. Shortly after his 84th birthday, my father fell and landed in the hospital with a split scalp. His metastatic prostate cancer was an incidental finding, and superimposing this wildly invasive tumor on his Parkinson’s-compromised body marked his first steps onto his death path.
I came to my father’s final illness as his daughter, a doctor, and a clinical bioethicist. While I was unable to be present day in and day out, it fell onto me to translate the diagnostic and laboratory reports and the medical record notes for my father and my sister, his caregiver. The bioethical rubric of respect for autonomy recognizes the positive obligation for the physician to explain the patient’s condition in a way that the patient can understand. Yet, after many conversations with both physicians and nurses, neither my father nor my sister comprehended the extent of his illness, nor did they understand his grave prognosis.
It was painfully apparent early in the process that my father’s body was shutting down and deteriorating. Yet, a palliative care/hospice consultation was neither discussed nor recommended. Each day, when I spoke to my sister about the need for her to request this consultation, her response was always, “I’m just going by what the doctors say.” She could not hear the message that our father was dying because it did not come from his physicians.
Several important bioethical consequences emerged from my father’s physicians’ collective abdication of responsibility to speak truth to him about his approaching death. Had he heard unequivocally from any one of his physicians that he was dying, shifting the focus from cure to comfort, he could have chosen how to choreograph his final days. He was robbed of the opportunity to complete any end-of-life tasks he might have chosen to address. Despite retaining decisional capacity, he was never engaged in dialogue about his impending death, nor about how to manage his excruciating pain from decubitus ulcers and excoriated perineal tissue.
One week before my father’s death, he was dragged to an oncology appointment — the one appointment I was able to attend with him. The oncologist provided nothing but a recitation of “what we do for metastatic prostate cancer.” There was no physical examination, no questions, no active listening, and no dialogue; in short, no meaningful communication. After I expressed my concerns about my father’s devastating co-morbidities and rapid deterioration, he simply doubled down about how many prostate cancers (not prostate cancer patients) he treats. My father lost all control of his death path. He lost the benefit of comprehensive, aggressive pain relief and comfort care. His personal autonomy was simply disregarded, his physicians failed to act in his best interests (beneficence), and their failure actively harmed my father (nonmaleficence).
Another bioethical consequence of my father’s physicians’ failure to speak without euphemism about my father’s approaching death is that my sister was blindsided when he died. She relied on “what the doctors say,” and what she heard them say was, “When we see metastatic prostate cancer, we do …” clearly violating her autonomy as his primary caregiver. My father was reduced to “the prostate cancer in Room 203.” She was robbed of the opportunity to meet with professionals who could have helped her come to grips with our father’s impending death, and robbed of any reconciliation she might have felt necessary. Her attachment to unrealistic expectations left her bereft the day he became unresponsive and died.
A final bioethical consequence of these physicians’ failure was the administration of cost-intensive medication with no potential positive impact on my father’s health trajectory, violating the principle of justice. Just 48 hours before his death, my father was dragged to yet another appointment — this time with a urologist. This physician simply ignored the fact of his patient dying before his eyes and injected a $7,000 dose of medication, painfully, into one of my father’s atrophied thigh muscles. There was no balancing of benefits to burdens, no consideration of the cruelty of inflicting a painful injection on a dying man, and no consideration of contributing to the out-of-control health care costs currently facing our culture.
As a veterinarian, I belong to the only medical profession on the planet that cares for its patients from womb to tomb. Consequently, death plays an important role in my practice, and end-of-life discussions come frequently, though never easily. These conversations are vital to honor the veterinarian’s obligation to advocate on behalf of beings who cannot advocate for themselves. As challenging as it is to accept the inability to change the death trajectory of a patient, grieving families appreciate the honesty of knowing, truthfully and not euphemistically, that their cat or dog is dying. It sets the stage for palliative care planning, allowing the family to decide details around euthanasia and body handling before any crisis. Pet owners, much like dying humans and their families, fear pain and suffering as death approaches. Knowing allows for decisions that best fit that family’s situation and values.
No medical provider wants to acknowledge that their patient is dying — it feels like failure. We in health care have our own anxieties about death and dying. That said, there are rich resources to help physicians accept this important responsibility to compassionately provide an honest assessment with realistic outcome expectations when their patient is dying. To be honest about impending death is not a denial of hope.
That my father’s tortuous death remains the norm in our culture shatters me. And the knowledge that a timely bioethics consultation might well have prevented my father’s unnecessary — and unconscionable — suffering shatters me. What sustains and propels me along a healing path, despite my failure to fulfill the role of bioethicist for my father, and despite his physicians’ failure to speak truth, is my understanding that end-of-life care and death can be different. I am committed to finding my place as a bioethicist, reminded as I am of the critical need for those whom David Rothman calls “strangers at the bedside.”
Robin Downing is a veterinarian.
