In my years in hospice I have heard the occasional snide comments, directly or indirectly, when family or friends have been dissatisfied with hospice services. I can understand the complaint of not liking a nurse or aide, or doctor’s personality and asking for a switch in caregivers. If I were dealing with the dying care of a loved one I too would not want to waste a precious moment interacting with someone I did not feel comfortable with. But I have also heard over the years from family members or patient friends, not frequently, but enough, that hospice care is what actually killed their loved one. This is where I draw a line. Hospice care doesn’t kill you.
To be eligible for hospice care one must have a terminal diagnosis with a life expectancy of six months or less. A non hospice doctor determines this. A referral to hospice is given when all other treatments have been exhausted or would prove futile. When a person is referred to hospice they may have already been sick for many months, maybe years. A person may, at the time of referral, still be living on their own, still may be able to drive, still may be engaging in family and social activities. Then, as is the expected, predicted course of their illness, something changes. Many times this means a fall, or some kind of blockage, or an illness like the flu or a UTI that brings the person to a hospice facility. From there, sometimes, things progress quite rapidly and the person who was ‘walking just fine by themselves last week’ are now lying unconscious, dying in a hospice bed. And because the person was ‘walking by themselves just fine last week’ it must mean that hospice is somehow the cause of this current situation. Hospice staff gave the person medication. That did it. Hospice staff had the person or family sign a DNR. That did it. Hospice staff told the person they were dying. That did it. Hospice staff refused to feed the person. That did it. Hospice talked me out of sending the person to the hospital which would have cured the person from their terminal illness. That did it. Hospice staff overdosed the person because that’s what they do. That did it.
There once was an elderly woman, in her 80’s, suffering from dementia and currently a flu like illness that had been going around the nursing home. Upon arrival to the hospice house her daughter had specifically stated that her mother was not to be given any type of pain medication even though her daughter had been aware that in the nursing home as at the hospice house currently, her mother had been moaning and wincing in apparent pain. Per the daughter’s wishes the doctor did not prescribe any pain medication although she did state that they were many options of mild pain relievers available as it was obvious that her mother was not comfortable. The daughter only agreed, reluctantly, to the use of one Tylenol, as needed every eight hours, ‘but only if absolutely necessary’. This woman was one of my patients. I saw first hand her cry out and wince when repositioned or when given incontinence care. Her daughter saw this behavior as well but observed ‘she has always exaggerated’ and ‘there is no reason for her to be in pain yelling out like that’. Late one evening after the woman appeared particularly uncomfortable and restless even without being moved, and began to spike a low grade temperature the nurse decided to give the woman one of her prescribed, as needed, Tylenol pills. The nurse reported the next morning that the Tylenol had only been ‘somewhat’ effective but that the woman was, after receiving the Tylenol, able to fall asleep for a couple hours. The woman died two days later. I met her daughter as she was leaving her dead mother’s room. She was as you would expect, very upset over the loss of her mother. She was also very adamant that hospice was responsible for her mother’s death as in ‘I told them not to give her any pain medication and that nurse still gave her that Tylenol!’ Of course I tried to comfort her, telling her that the one Tylenol that had been given was over 48 hours prior to her death. That the nurse, in her best, experienced judgement, saw that your mother was suffering and was only trying to alleviate her pain and make her comfortable. The daughter allowed that she agreed that she thought the nurse was only doing what she thought was right, but she insisted and maintained that it was the Tylenol which had been the cause of her mother’s death. Her mother was not allergic to Tylenol. Her mother had had Tylenol previously her whole life including at the nursing home without any adverse effects. But I could not convince this daughter that it was the combined forces of her elderly age, unhealthy status in general which had made it necessary for nursing home placement, in addition to the simple illness which her frail body was simply unable to recover from which had been the real contributors to her mother’s death. Irregardless of that, the daughter filed a complaint that hospice and the nurse specifically had caused her mother’s death. And more than likely this daughter told everyone she knew that hospice killed her mother.
Another daughter who lived out of state came to visit her mother who had Alzheimers and had been living in a nursing home for a few years. The daughter found out from the nurses at the nursing home that her mother had problems with hemorrhoids, ‘off and on’. The daughter took her mother to a doctor to inquire about the possibility of having the hemorrhoids surgically removed. Four doctors refused such a surgery for her mother because as the daughter later told me; 1. the hemorrhoids weren’t that bad, and 2. the woman because of her age and poor health status was not a surgery candidate. Doctor number five agreed to the surgery. While performing the surgery the surgeon accidentally perforated her mother’s colon, which resulted in sepsis, which resulted in her mother never waking up from surgery. Her mother was referred to hospice and arrived at the hospice house unresponsive and actively dying. Her mother died two days after being admitted to the hospice house. Her daughter blamed hospice for her mother’s death, because she believed, ‘her mother could have been maintained in an unconscious state indefinitely’.
Two stories from my hospice experience. My experience as a hospice nurse has been primarily caring for people in the last two weeks of life. I have never had a healthy person come into hospice. All my patients have documented proof of disease, illness and treatments and outcomes. I am very aware that even in 2017, that there are not cures to fix every ailment. I am aware that even a treatment that has worked for someone else may not have the same results with another. I am aware that cured illnesses sometimes do return unexpectedly years later. My work in hospice has made me accepting of death as a part of life. I accept that our body’s organs have an expiration date, that these organs after years of working hard with the diet, exercise or lack of exercise, pollutants ingested, inhaled, knowingly or unknowingly, all have a cumulative effect. I am sympathetic to the regrets of everyone involved, but sometimes dying is simply dying and it isn’t anybody’s fault. And most importantly, I do empathize with the lingering doubts of those left behind, ‘what if I had tried that sooner’, ‘if only I hadn’t done this or that’, ‘but the doctor said this would work’, ‘but the doctor said she had at least six months’, “but he was walking just fine last week….’