The fear of dying soon and burdening others was the usual catalyst for calling my Uncle Henry. He sold cremation plans for one of the larger well known cremation services. Henry’s job entailed visiting seniors who had filled out a mailer inquiring about cremations, although he once followed up on a mailer from a young woman who traveled all over America riding on rollercoasters with 300-foot drops and names like “Exterminator,” “ Apocalypse,” and “Poltergeist.” She was convinced that she was going to one day die in her quest for that instant adrenaline rush while ‘serial’ riding on rollercoasters.
Henry’s main goal was to help folks make that final decision as economically and simply as possible while at the same time having a say so as to what happened once they were deceased. Just as the young woman had decided, the purpose was to avoid burdening their children and loved ones with any financial and emotional decisions that would occur in the event of their death.
The topic of dying was always a difficult one for my Uncle to talk about over the phone with people, so Henry often had to travel up to 50 miles dressed in his “Sunday best” to discuss one’s final arrangements. He was always sensitive yet at the same time up front and realistic regarding all of the contingencies that could occur surrounding a death. The topics he had to carefully finesse during his visits were questions such as, “What if your children could not afford to make your final arrangements”, or “What if nobody knew that you had made any arrangements?”
One of the services that was available was to insure the transportation of the remains. After all, the client’s death could occur away from home such as dying on an Island, which actually happened to one of his clients. With this particular client there was no crematory on the Island and only by the stroke of luck had the transportation policy been purchased. A helicopter had to be flown in to pick up the remains. Without that policy the family would have been stuck paying a funeral home to ship the remains back; a costly situation, indeed.
A lot of folks tried to forgo the transportation policy. They never considered that they could die anywhere but in their home. Did they think the family could just drive them in the back of the Chevy with the air conditioning on full blast to the crematory? Does not sound pleasant, by all means.
In order to lead up to that subject so as not to appear to be “upselling” transportation services, Uncle Henry once asked a very spry 85 year old woman, “Do you know when you are going to die?” She said, “No one knows that.” He then asked, “Do you know where you are going to die?” She quickly responded, “If I knew that, I wouldn’t go there.” “Well, that makes sense,” he replied. Henry laughed all the way on his ride back home but never forgot what she said.
Hearing about Henry’s “stories” about death and dying made me a bit afraid of him growing up, I must admit. I certainly did not want to think of my grandmother or parents being called on by someone from a cremation service and was always afraid that day might one day come. I’m not sure if Uncle Henry’s stories were ultimately meant to help me prepare for my job as a nurse practitioner working at one point for a long term care facility. You always faced doctors and nurses aggressively caring for the critically ill while full knowing that the patient may not benefit or at the end of the day the patient ultimately may not want the care.
End of life decision making is one of the most challenging ethical issues that physicians and critical care nurses face, often bringing the highest level of moral distress not only to the physician but also to the critical care nursing staff. Especially, when the provider faces the challenges of communicating to families in conflict or indecisiveness information related to life support, while at the same time having these families face very poor prognoses.
Physician to family communication actually was toughest for families that wanted to be more involved in the decision making process. It was very hard on them to accept and at times respect the autonomy of the patient in the decision making process to decline unwanted treatments.
At the end of the day, I often thought of my Uncle Henry and his, “If I knew where I was going to die, I wouldn’t go there” story. If only it was that easy! I could appreciate the simplicity of what his service provided, yet the complexity and precariousness of the autonomy that at the moment in time his clients ultimately controlled.
Cynthia Jaffe, D.C., NP-C, F.I.A.M.A