I have had a hard time at work this week. I have been yelled at and insulted by family members, had attempted intimidation by family members, and been asked straight up if I’m “resistant, am I sensing you are resistant to what I’m saying??” by family members. All four of these incidents are stemming from family members who are in either rehab or in long term care and on hospice; all of the the patients are in their 80′s. All have conditions which are ultimately terminal. One has end stage COPD (emphysema) and has dementia, one has colon cancer with two operations to remove sections of bowel, one has a surgically repaired fractured hip and dementia, one has Parkinson’s and advanced dementia and a surgically repaired fractured hip on top of it. None of these family members has come to terms with mortality — not in themselves, and most certainly not in their family members. They take their fear and lack of maturity regarding this oh-so-integral part of life out on us, the staff, by attempting to use yelling, name calling, insults, and intimidation to force us to *make* their family member our special priority and use our super powers to reverse fate.
You will notice I used lack of maturity in regard to them. I truly believe this is so. Once up0n a time, death was common and untimely death was more so. Everyone had a death they had witnessed, everyone had a funeral or three they had attended. Death was something that was immediate, commonplace, an ever-present possibility. One’s own death was contemplated as a religious observance:
“Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.” – Atul Gawanda The New Yorker, 2009
Medicine, in particular Western medicine and the doctors who practice it, are in large part responsible for the change in our culture from contemplation and acceptance of death to refusal to accept death in any form, any time, whatever. Doctors themselves are uncomfortable with death, and often refuse to acknowledge the possibility even to themselves, let alone to their patients or family — hence the focus on endless medical interventions even in the face of – frankly – futility. One can always find stories that showcase the 15% of patients who defy the odds and do well, like this one but the reality is that 85% of people (more in my experience) do not do this well at all. In fact, they usually go from hospital to rehab facility back to the hospital to rehab to long term care and then, if they’re lucky and their family is compassionate and mature, to hospice.
I am of the firm conviction, having worked in the medical field for more than 20 years, that contemplation of death is a healty thing to do. Not only is it healthy, but it is necessary for full maturity as a human. Those who refuse to accept mortality, in themselves or in their family members, have not matured into a full human adult. They are eternally teenagers, thinking they are the exception to the rule and that they are immortal — or even worse, thinking that if only their loved one could go on forever (or at least until after they themselves are dead) then everything will be just dandy. I would say that this way lies madness, but I think it’s even worse than that: this way lies unutterable cruelty. The family members are not there, day after day, to see the misery and decline of their loved one. We are. The family members are not there in the dark hours of the night to see the suffering and despair. We are.
Who are we? We are not the doctors – they come in for 30 minutes perhaps daily, perhaps once or twice a week. We are the nurses and nursing assistants, the social workers, and the ancillary staff. We are the ones who are left hanging out to dry by our administrators when we don’t meet the expectations of the family, who are usually making the decisions for their loved ones. We are the ones who see the suffering and try, as best we can, to comfort and support. We are the ones who are trying to follow family dictates, however fanciful, and provider orders, however unrealistic. We are the ones *with* your loved one. Because you cannot deal with their mortality.
Please, if you love your family members, if you have respect for yourself, begin a contemplation of death. Decide, with those closest to you, how you want your life to go if you cannot make those decisions for yourself. Write them down, and ask your family members to abide by them for love of you. Think carefully, for miracles do not exist, only blips on statistical charts. Do not think yourself so lucky that you will be the blip.