On Hospice, End of Life Care, and Grieving Families

[Gargamel]

I spent many years as a medic in the Greater Cleveland area, and a good portion of of my work for a while was providing 'emergency' care and transportation to hospice patients. Over the many years I worked with the Hospice organizations in the area, I started to gain a strong insight into the grieving process of family members of the patients.

This thread is a kind of diatribe spawned from the post I made, http://www.subsim.com/radioroom/show...ostcount=17439. Some of my most memorable calls were with hospice patients, as there wasn't much I could do medically for them, I was frequently there to hold their and their family's hands as they passed on.

What follows is a clinical view of the grieving process and end of life patients. There is a definite health care worker spin to some of the comments I make. Remember this as you read, as I'm not trying to offend anyone, especially anyone who has gone through this. This is just what I had to deal with on a daily basis.

We all know there is the grieving process. There's supposedly 5 steps to it. I have seen almost all of them, in full force. Rarely did I get to see the end, but the middle parts were the worst. From my experiences though, especially with the later group, I firmly believe there are more steps. Hospice patients usually do not die quickly, but in a drawn out process, some longer than others. From watching them and the families, I have divided them into three groups.

Type 1 Patients-

These are the car wreck, Heart attack, gunshot, etc, type injuries or illnesses. They are sudden and with little to no warning. The families have not had any chance to come to grips with what has happened. There are usually fully into the first step or two of grieving, Denial or Anger. These families are the most "troublesome" to work with, as they can sometimes do things detrimental to me or even themselves. Depending on the situation, we sometimes didn't have the resources to handle the patient and them. These types of patients rarely had DNR orders in place, so the trauma to the family of seeing us work on them often made it worse. Not much more can be said about these types, as they are well documented in popular culture and other forms.

Type 2 Patients-

These are the easiest, and I hate to use this word, but "happiest" to work with. These are patients who have been diagnosed with a terminal illness in the recent past (3-4 months), and the illness has progressed fairly quickly. The progression is such that they have made end of life plans, they have their affairs in order, but the illness is quickly starting to consume them. They have felt the pain of dying long enough to know that they are ready to go. I have had more patients than I can remember look up at me and say "I'm ready, it's time for me to die", and say it with almost a smile of relief on their face. At first I asked why, but they all gave the same answer. They seemed to welcome death with open arms.

The families usually had progressed through the grief stages along with the patient. They have been caring for them for a little while, they understand the struggle they are going through, and they too are ready for the patient to pass. They are not wanting it, but have come to accept that it is the best thing. Caring for the patient has been a short term affair, they have not had to completely reorder their lives. This was the type of family I encountered in the post I linked. They are saddened by the loss, but it did not come as a surprise. They will mourn for some time, but they are not devastated as in Type 1's. They were the easiest to work with, as they would go out of their way to help, often forcing food and drink upon us. One family that ran a pig farm forced each of us to take about 15 lbs each of fresh homemade sausage with us. We ate well at the station for a while after that one.

Type 3 Patients-

These were the hardest to deal with in my experience. The patient is no longer a person. They are a shell of their former selves, just a vessel of barely functioning organs that refuse to die. They have been on the brink of death for a long time, sometimes years.

Usually the family has been the primary care givers, often only the spouse or a close relative or two. Their lives have revolved around the patient for the last few years. They are broken, depressed, only shells themselves. They have gone beyond the grief process. They are now hoping for the patient to die, to release them of this burden. They resent the patient, and they feel guilty for it. Usually we ended up providing more support to the family than the patient. We were often there to help setup respite care, taking the patient to a skilled nursing facility while the family had a break. This vacation sometimes only made the guilt worse. When the patient did pass, the family was usually lost. They had centered their entire lives around caring for them, and now they had no focus. Usually these families were of minimal help to us, as mentioned, they almost required more care than the patient themselves.


I post this just as an informational essay. I do not have a point I'm trying to make, other to let you into the mindset of us that have to care for these patients and their families. I hadn't really thought about this topic in some time, but the picture I saw brought it to the fore front.

I was going to include some of our 'internal' practices we'd do as medics while responding to these calls, but as medic humor is quite dry and morose, and the tone of this essay doesn't quite fit, I'll leave them for later.