My husband’s death had nothing to do with hospice, but I’ve been going to grief support groups there that are open to all. Wonderful people. There’s always soup and coffee and cookies and sunrooms and tissues and just a sense that grief and death can have dignity.
After months of hospitalization and nursing home, my dad finally went to a Hospice facility for the last few days of his life. He arrived at approximately 2pm and was hungry. I asked him what he’d like and he said, “bacon and eggs”.
I went to the desk fully expecting to hear the 10,000 reasons why they couldn’t serve my dad bacon and eggs at 2 in the afternoon. Instead, I was received with a smile and an attitude of “what CAN we do for your dad”. The nurse took me to the kitchen, helped me put together a hot meal of fresh bacon and eggs, and dad was a happy man.
IMO, they are angels on earth. Healthcare workers are trained to concentrate on the medical needs of the patient. Hospice workers focus on keeping their patient comfortable as well as on everything else.
If there is such a place, there’s a special place in heaven for hospice workers.
They were there for both my parents. What stands out is the day I came back from the drug store after waiting 45 minutes (for a prescription sent in advance) for her pain medication. They didn’t have all the pills and said I needed to go to another store. The nurse who was there called the drug store and read them the riot act about how much business they get from hospice and they will PERSONALLY deliver the medicine to the house within the next hour. I was impressed.
My experience with hospice was as a volunteer, not as a medical provider or a family member, and I couldn’t do it long – it takes a certain type of person who can open thier heart to people in such dark need, and yet not let it eat into you. I think I did okay in the former, but I couldn’t accomplish the latter, and so it was a not a good volunteer fit for me.
But one issue that I think has only been obliquely mentioned, but that I personally think is hugely important, is pain management. Doctors are generally trained that you don’t want to give a patient too much pain meds, because it could lead to addiction or the drug could lose efficacy for the patient. Especially for opiates, they worry about building up a tolerance that could lead to unsafe dosage levels being needed for effective pain management. Putting someone on morphine is A Big Deal, and you want to get them off it ASAP.
What has sometimes been lacking is the recognition that many of these concerns do not apply, or do not apply in the same way or to the same degree, when you’re talking end-of-life comfort measures. The result has been, in the past, that sometimes terminal patients are not made as comfortable as they could be, because doctors run into the Danger! Will Robinson! training they’ve received about prescribing drugs (particularly narcotics) in such quantities or for such durations.
One thing hospice can do is make sure you have access to a doctor who understands the interface of pain management and terminal conditions. This can be hugely important to patients who are dying of very painful conditions, and who should receive every option to reduce their suffering.
In fairness to doctors, AFAIK or have been told, this problem is much less prevalent now than it used to be, and medical training in end-of-life issues has become more standard and hospice care more common.
When my wife was in home hospice she was not initially in much pain (she was in final stage Parkinson’s) but one of the things that the hospice provided was a bottle of morphine in case her condition worsened and she was showing signs of distress. I was given specific instructions on how much she could be given at a time, and how often. As it turned out I only had to use it a few times. When I got home the day she died I noticed that the bottle had already been collected by the hospice, although her other medications were still there.
My Mom spent her last days in hospice while losing her battle with kidney cancer. The place was staffed with beautiful, caring, sensitive people. The facility was great as well: Her room looked like a luxury ski lodge and the food was fantastic. This was in Canada so everything was completely free. My Mom was so impressed with it all that she gave them $50,000.
Is it important to the OP to distinguish between home and facility hospice? My mother was at home, which is where she wanted to be.
My grandfather died a couple of years ago during a brief transit stay in what was probably not the world’s shittiest nursing home, but must have ranked near the bottom in that zip code. (If ever there were an environment custom-made to accelerate the dying process, it is that of a tiny, grim, depressing, squat red-brick nursing home.) I believe hospice only became involved within his last 24 hours, and as my mother put it, it was like they flipped a switch: unfailingly conscientious and attentive, constrasted starkly with the diffident, shrugging “care” he’d received during his prior weeks as a not-quite-yet-dying man.
The only pseudocomplaint my mother had was the hospice worker’s repeated offers to administer morphine to my grandfather, who didn’t report any pain (nor later demonstrate any, after his ability to communicate had deteriorated). It didn’t bother me; I assumed that they preferred a “just in case” approach and that morphine was probably considered useful for its anxiolytic effect (both on the dying patient and surrounding family) as well as for analgesia. (And to patients/families who may have dealt with undertreatment of pain up to that point, it’s probably a godsend to have the barriers removed.)
The hospice experience particularly made an impression on my mother, who is nearing retirement and wants to find a way to participate in hospice care on a volunteer basis, if she can.
tomndebb - My comment about the day my father died was to illustrate that all they did after arriving was A. - verify his death. and B. - flush the meds. And leave. Although I do believe the nurse said she’d stay with my dad’s body until the funeral home got there if we didn’t want to do that. There was no caregiving before he died. They wouldn’t come out until we told them that we went through the checklist and were quite sure he was gone. He wasn’t at a hospice facility, but at home.
StG
My grandmother died in a hospice facility this fall.
She was diagnosed with lung cancer in the summer. She spent some time at home. Then she had issues unrealated to the cancer (blood clot issues I think) and they decided not to treat. From there the end was fast, and by the time they found a hospice bed for her, she wasn’t aware to see what great attention they paid to her - which was a shame - she would have LOVED being treated like a princess. And she was - even in a coma - for the last few days of her life.
More importantly, the hospice workers were there for the family - providing space, time, cookies, soup, coffee, support, guidance and prayer. They really are exceptionally special people - mostly volunteers at this place.
The only compliant - this facility was private and very expensive. Beautiful and worth every penny we paid for it - and my grandmother had enough assets that it wasn’t a burden - but I don’t think this level of care at this type of facility would be generally affordable for more than a few weeks - and for many people, not affordable at all.
We donated all the funeral money to the hospice.
I think they do a terrific job.
My father-in-Law was diagnosed as terminal a couple of years ago. Once we were willing to let Hospice in, they helped in all sorts of ways. They set things up so he could stay with my brother-in-law and helped provide an aide so someone other than my wife could stay with him during the day. My FIL would never have wanted to go into any sort of nursing home so being able to stay with family made it a bit easier on everyone.
Where they really made a big difference was when he finally died. My BIL called their rep right after notifying us, and he was there before I was. He knew what needed to be done – calling the funeral home, arranging for pickup, dealing with the drugs that needed to be disposed of. He was calm and caring, which made it easier for all of us.
In addition, since Hospice was there, there was no need to contact the authorities. You didn’t have police and ambulances waking the neighborhood, just a quiet period of mourning until the funeral home people arrived.
It made it much easier on everyone. When Hospice is needed, there is no better organization for your peace of mind.
I serve on the allocations panel of our local United Way. Our local area hospice has requested funding every year since I can recall. Our group does site visits, and received brochures and additional information, in addition to the grant application. And, each year, the hospice is awarded the funding it needs to continue to provide services (free of charge) to those who need it.
I’ve never been in the situation where me or mine needed hospice, but if the need ever arose, I wouldn’t hesitate to contact them.
Also, INAD, but I’m pretty sure one of the initial reservations about increasing dosages of morphine is because it decreases respiration. Relieving pain is one thing, ODing on morphine is another.
My FIL chose to end his days at home, with his wife (a nurse.) The home hospice (nurse) workers were incredible. They were there for them both, and coordinated with his doctors to keep his medications where he felt as little pain as possible. His wife really relied on the emotional support she got from them as well. They did a lot of hugging and hand-holding, and some errand-running, and whatever else they could to help. They were angel.s
Some 10 years ago, my husband’s grandfather had just entered hospice and was doing pretty well, so every one of his relatives decided to go out of town for Thanksgiving. My husband thought he’d like to pay his grandfather a visit on Thanksgiving, so we drove up there (about an hour away) and were met at the door by the staff who had been trying to call all three children to find out the designated funeral home because Grandpa had taken a turn for the worse and likely wouldn’t last the night.
We were, of course, completely unprepared for this, and spent the rest of the day taking turns comforting Grandpa and frantically dialing every cousin we could in an attempt to reach the aunts and uncles and tell them to get home pronto to say goodbye. The hospice staff shared their Thanksgiving dinner with us; we seemed to be the only visitors. My husband’s brother and his wife got there to relieve us so we could get to work the next day, and Grandpa managed to hang on through the night till his children arrived, but he died shortly thereafter.
The hospice staff were astonishing – they not only took care of their patients, but of us, who were totally blindsided by this sudden combination of grief and frenzy. They were like medical concierges!
And on another note, one of my dogs is a registered therapy dog and has visited friends in hospice, both at home and in the facility. The staff are very aware of the benefits of pet therapy and are glad to have the dogs visit. When one of my friends couldn’t even lift his hand to pet the dog, his wife put his hand on the dog’s head and helped him pet him. His whole body relaxed and his breathing evened out. It was just a wonderful thing.