When told that she would be doing part of her clinicals at FairHoPe Hospice and Palliative Care, Inc., a nursing student wasn’t too thrilled. She said when she first found out where her assignment would be many thoughts ran through her mind, and none of them were good.
“Am I only going to be around old people? Are they all bedridden? Do they have dementia? Can they still talk?” She realized that all of her thoughts of hospice were negative. She had to admit that her initial thought of hospice was that it would be a depressing place. After all, don’t people go there to die? She had a case of “contempt without investigation.”
But as she accompanied the FairHoPe Hospice nurse on her rounds, the student became involved in what hospice does and her impression of hospice changed completely. The first thing she learned about FairHoPe Hospice was that people don’t go there; FairHoPe comes to them. In her own words she said that, “I have come to realize I have never been more wrong about anything.”
That response has universally been my experience after talking to someone who has been involved with hospice. After an experience with FairHoPe Hospice, “If only I knew” is the common comment I hear from many of the ill person’s family members.
As a whole, society’s way of thinking about the end of life is changing just as our intern’s did. The idea of making the act of dying a medical experience is only decades old. Until the late 1940s most deaths in the U.S. occurred in the home.
By the late 1980s, however, dying had become viewed as a medical event and was no longer thought of as a natural or spiritual event. The view of dying came to be viewed as something that happened in an institution. By the late 1980s it was estimated that only around 16 percent of Americans were dying in a setting other than a hospital or nursing home.
And that way of thinking, that death was a medical event, was held by society as a whole. Both doctors and the family of a patient seemed to feel that for a seriously ill person everything possible should be done to prolong life. The thinking was that everyone will die eventually, but don’t let them die now. Actually that still seems to be most people’s way of looking at things when involved with an end of life crisis.
The steady growth of hospice care seems to indicate that the general public is starting to understand how hospice care can be a tremendous comfort. But medical field, with encouragement from families, often remains focused on the pursuit of longevity of life no matter what. There is not much thought as to a good quality of life. Quality of life is what hospice is about and that is where the basic conflict lies.
FairHoPe allows the people on its service to pursue their dreams and to have priorities other than just to live longer. FairHoPe encourages the people on service, with the help of their families, to finish their life on their terms and to maintain a meaning or purpose in life.
In the last decade with the growth of the hospice movement, more books are being written about the modern experience of aging and dying. These books tend to focus on the need for a transformation of medicine’s role in affecting the quality of the dying experience, not just trying to prevent it. It is frustrating for FairHoPe staff to see how society’s hesitancy to examine the experience of aging and dying has extended the suffering of terminally ill people and has denied them basic comforts that are most needed at the end of life.
I’m sure that there are several factors, but I think that the hospice movement has helped society’s thinking to begin to move away from the institutionalized version of aging and death. As with any change, there will be some aversion to a new way of looking at things.
But those in the medical field are learning through understanding what works or does not work in our current approach to caring for those nearing the end of life. We will find better approaches to end of life care than the “do everything” approach.
A physician I spoke to at a health fair told me that his impression of what we did was to give a patient a high dose of pain medicine and let nature take its course. Obviously, that is not true. FairHoPe’s efforts focus on the goal of respecting a patient’s priorities and honoring what makes living worthwhile.
This physician also mentioned how hard, albeit almost impossible, it is to begin the difficult conversation of telling a person, especially one he’s known for a long time, that there is no cure for their condition. He said that if not the patient, then a close family member will sometimes plead that the physician at least tries to do something.
The most important aspect is for the physician to convey that he is on the patient’s side. Then ask the patient about specific fears and what trade-offs they are willing to make. This allows everyone involved to decide what choices would be best.
Not all end of life situations are hospice appropriate and it is very important to look at all sides when faced with the biggest crisis life can offer. But if it gets to the point that enough is enough, call FairHoPe Hospice and Palliative Care, Inc. The student nurse, mentioned in the beginning of this column, learned through experience that FairHoPe care is good care. It is a good choice during the last stage of life.
The purpose of this regular column has always been to help the general public and medical personnel learn about hospice care.
Rick Schneider, of FairHoPe Hospice, writes a bi-weekly column published in The Logan Daily News. The views of this column may not necessarily reflect that of the newspaper.
Author Rick Schneider
