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/showpost.php?p=2334537&postcount=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.

[Eichhörnchen]

You took a lot of care in writing this, so thanks for a conscientious and informative post, Gargamel: much to ponder and digest here :yep:

[CCIP]

Thanks for this! These are very accurate observations in my experience (and although I'm not a medic, I've encountered end-of-life care issues in a whole bunch of different capacities). My only wish is that both the patients and families have the right kind of professional help on hand when all this happens, regardless of type and regardless of scenario. Death is an awful thing for everyone involved, but I think it's still possible to do a better job for everyone involved.

The tough thing too is that although you can definitely split things into types and find ways to work with them, sometimes life still throws a cog in the wheel. Probably the worst experience of my entire life was losing my grandmother, who was a mother figure to me and was well on her way to becoming a Type 3 patient with her Alzheimer's as per your classification - and then one day, was murdered in a botched robbery. I can't speak for the rest of my family, but for me, that was mentally so destructive that nearly 8 years later, I'm still not really over it - sadly, the way human minds work is tricky and in some ways it's much easier to accept losing a loved one than to have your whole world turned upside down to the point where nothing makes sense anymore. Often, those two things are one and the same; but other times, it's not the loss itself but the inability to cope with it that does it. Which is why I really do wish for families to always have the right support on hand.

On the other hand, if I take my grandfather - he was the sort of guy that everybody thought would be healthy as a bull and active for his entire life, until one day he'd just drop dead on the spot. He was a village boy, handyman, fisherman, gardener, you name it - and he did all these things well into his 80s, along with eating one of the worst diets I've seen a man eat and drinking like a real Russian (i.e. plenty of straight vodka). In his last year, he'd finally started declining and wasn't able to do all that he wanted, and his doctors were mostly focused on his cardiovascular health - he had a mild arrhythmia and other issues that pointed to his heart being at risk of giving out - and as a result, they missed the real killer. Then one day he just stopped eating, and two weeks later he was gone. He didn't want to go, he was not really the Type 2 in your classification - his mind, which was still really sharp, said no - but his body said it was time, and he just couldn't eat anymore. He couldn't even explain it, he kept repeating that he didn't want to die and that he wanted to go see his garden and fix the summer house, and then one night he just died in his sleep. As it turned out, what got him was an undiagnosed terminal stomach cancer that the doctors missed while focusing on his heart problems. In some ways, I think he was probably really lucky not to have it diagnosed - the treatment probably would've been worse on him and the family than the disease, and even if he had a few more months he would not have been spending them gardening and fishing and fixing the house like he wanted to anyway. So although he was not the classic Type 2, I think both he and the family were, in a lot of ways, fortunate. He wasn't the kind of man who knew how to be ill, and the family were already mentally prepared for something to suddenly take him one day, not a long illness. It felt, in a strange way, really good for a change to just be able to have a good cry, remember the good times, and move on.

End-of-life stuff is tough no matter where you come from, but there's certainly lots to learn about and lots of things that I think people can do to better be prepared!

[Mr Quatro]

Very interesting topic, thank you Gargame for your first hand reporting.

What do you think of the new push for assisted suicide?

Check this out: http://www.bing.com/news/search?q=assisted+suicide&qs=PA&form=NWBQBN&pq=assisted+&sc=8-9&sp=3&sk=PA2

I think it's legal in Oregon if I'm not mistaken and now California is considering it.
I'm not talking marijuana of course I'm talking taking a life before it is finished.

Some of these people are mentally ill, like the nurse in Switzerland, but some are just plain tired of the medicine game.

also have any of your patients described heaven or hell in their passing moments?

[Wolferz]

Your post was insightful, compassionate and straight on the mark.:salute:

I knew as soon as she was released from the hospital that it was only a matter of time. She was displaying all the classic signs of PTSD from the treatment she received. Throw COPD into the mix and it spells you don't have much time left missy.
She immediately began discussing her end of life arrangements and like always, she procrastinated on getting it done. Well, her decline has been rapid which only added extra stress on all of us.:-?of her departure. There will be no calling an ambulance, just the hospice care company and they'll take care of the rest.
I still need to visit the funeral home to arrange for her cremation. But, with her son and I taking shifts in caring for her, there isn't much time to get it done.

The poor woman is so emaciated, she looks like a holocaust victim.:dead:
Fortunately we have an excellent attorney who expedited the paperwork and we're all set for the aftermath.
Except for the grief of course.
To me it's going to be a relief and I have no guilt about it because my special gal has been flat on her back off and on for about six of the eighteen years we've been together. Nursing is not a profession I would choose.

[Commander Wallace]

Very insightful Gargamel and CCIP. It's very stressful and difficult being in the health care field or being a first responder at car accidents, fires, etc...
Most professionals say to focus on the job at hand and put it behind you. I don't think that's really possible or realistic. A woman I grew up with, who is a registered nurse, is pretty much burned out after giving all she had to her profession. She was unable to leave her work at the hospital although she tried.

Most caregivers, whether in hospice care or emergency rooms etc end up using a justification. such as , " well, they are 90, etc and lived a good life so it's time for them to go . " It's not true, especially for their loved ones grieving them but the medical people use that as a defense mechanism to get them through the harshness of losing a patient especially if they are somewhat involved with the patient and their respective family. They hurt for the patient and family too but try not to show it. If on the other hand you are dealing with the loss of a child or younger person or someone with a family from a tragic accident or senseless act, then no amount of justifying or mental game playing will fix that. At the end of the day, you still have the loss of a precious life that was taken far too soon. It's a no win situation for the health care teams but they do it day in and day out. This is one reason why so many health care professionals burn out .


All I can say is where would we be without them ?

[Armistead]

Hospice is certainly a good thing. I have seen both parents through the dying process in the last 5 years and my wife with her mother.

I often regret putting my father into hospice care, but who do you blame, doctors, him, family. He did fairly well off and on, suffering from COPD, but mostly complained of severe back pain from surgeries. He was basically way over medicated from numerous doctors searching for help for years. He got to the point he would miss constant doctor appts just saying he was in pain and didn't want to get up to go. He survived a bad bout or pneumonia due to COPD damage and his doctor said he had a year or so left at best. Didn't go on hospice, but back to missing appts and losing pain meds. I bet he was on 30 meds for COPD, pain, depression, sleeping pills and common older age issues, but he was still mentally there. I finally agreed to hospice since he often missed doctor visits and suffered withdrawal when they wouldn't write pain meds. Obvious, once you go to hospice they will continue meds, but further help to get better is over. Slowly he was doped up on Haldo and other meds until he had no clue where he was. I took much time to be there many days a week for a few months. Sometimes even laying off the Haldo so he could be mentally aware and talk. However, without it, he wouldn't sleep, crawled out of bed. Finally move to a hospice dying house and he quickly passed.

In the end, it was his choice not to go into asst. living where he could continue working with doctors, but at best maybe he would've remained mentally normal and lived some extra months. He just wanted to be at home and he was but for 3 days.

[Wolferz]

It's a bitter pill to swallow, Armistead my friend.

My mother, God rest her soul, also succumbed to COPD, complicated by breast cancer/mastectomy. And naturally the greedy medicos wanted to use chemo on her too, using the old ploy...it's right next to the lung wall.
I advised her against it because of her weak immune system. The chemo finished her off.
On my last visit to see her before she passed she confessed that I was right and she should have taken my advice.

She might have had a few more years left beyond the 78 she had.:-?

Shewolferz is a slightly different story.
She has COPD from smoking menthol cigarettes all her life, coupled with numerous broken bones over the years, an enlarged left ventricle(a birth defect I'd wager) and started having A. Fib episodes. (irregular heartbeat) Caused her to pass out and fall down.

But, I think the thing that started her decline the most was a flu shot she got way back when. She's never reacted well to meds and vaccines that wouldn't bother most of us.

All of that would wear anyone out and I think lifes burden has become unbearable for her.
She's ready to go.

[fireftr18]

Good thread Gargamel. I think you hit it spot on for your classifications. Great responses from everyone else, very insightful.
Commander Wallace, you're right about the stress of critical incidents. Not only do we have the patients to deal with, but also family and friends. We normally cope immediately simply by doing our jobs, afterwards it's talking it our among ourselves. The stress adds up and has a permanent effect on us. That's one of the reasons for early retirement. I still have vivid memories of some of my calls.
:Kaleun_Salute:

[Commander Wallace]

Well fireftr, the stresses might have forced you into early retirement but you have the knowledge that you saved people's lives and or made them better. I don't think you can do any better. I guess the stresses are similar if not the same as PTSD. For people in the health care field , including hospice care or first responders like paramedics and firefighters among others, it's not what they do but rather who they are. They are all a special breed.

So for you and all of them in that field. :salute:

[Jimbuna]

A good and insightful thread which I can certainly relate to when thinking about personal and professional experiences over the past years.

None of us are as knowledgeable as all of us.

[Wolferz]

A good and insightful thread which I can certainly relate to when thinking about personal and professional experiences over the past years.

None of us are as knowledgeable as all of us.

A very good saying there, Jim:up:

If 100 people can solve 1% of a problem each, then the problem gets solved 100%:salute:

[Wolferz]

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

This one fits my situation to a tee. We knew it was only a matter of time and when I checked her this morning and found her expired, I felt only a sigh of relief that she was no longer suffering in pain.

[Kpt. Lehmann]

@ Wolferz... I am sorry for your loss, mate.

@ Gargamel... Much respect, fellow medic. It felt as if you were writing about my own career and experiences. Some things are universal in our field.

For what it is worth, I have 'lifted the sign' too. Hang in there, guys.

[AVGWarhawk]

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/showpost.php?p=2334537&postcount=17439.
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.

This is my experience with my MIL and FIL. MIL died of cancer. Age 50. Completed the treatments(chemo). Took 13 months before she succumbed. She was a #2 for sometime but as it progressed she moved into #3. Final stages of her life were bald, blind and on morphine. The last day of her life was a call made by the paramedics. Many times over the last month the paramedic were called to transport her to the hospital. The day she died was the day the paramedic refused to be dispatched. In essence, they made the call as to the day my MIL was to die. It was as we say, "Lost cause." It truly was. Our last month was 24 hour watch of a woman who did not sleep anymore and spent a majority of the time mumbling. She did ask repeated to keep running "The 10 Commandment" which we did. Knowing the inevitable much of our grieving was done before that day. However, it was a very said day.

My FIL at age 55 also was diagnosed with cancer. Understanding what his wife endured the 12 months on chemo he decided not to attempt to combat the cancer. We also understood the inevitable at this point after the MIL death. Within 3 months he passed.

It is tough no matter the situation. I would like to say that hospice did serve it's purpose and made the acceptance of death a bit easier. Hospice helped with the passing of my MIL. I'm truly glad for hospice care.

[Wolferz]

I'm truly glad for hospice care.

As was I.:up:
The nurses and aides did an excellent job in maintaining milady's dignity and assisting her boys in dealing with the inevitable conclusion. We both had already grieved and her last day wasn't the major shock that comes when a loved one passes suddenly.

The worst part of the whole ordeal was her begging us to end it early and or send her to the hospital. It breaks your heart when you must tell your one and only... "Sorry babe, there's nothing they can do for you above what we're doing now.":-?

[Gargamel]

Wolferz, I am deeply sorry for your loss.

To all, I received quite a few PM's regarding this thread. While positive is not the right word, supportive maybe, they were all kind words. So thank you for listening.