End of life care
Raptor Eye
Shipmate
in Epiphanies
We haven’t got end of life care right.
A friend recently died in her sleep, having gradually deteriorated mentally and physically in her nineties and been looked after in a well-run but expensive care home in which the staff really did care. That’s as good as it gets.
But some of the memories in my mind rattle and trouble me:
An outspoken aunt who was reduced to saying quietly to me “you don’t complain dear, they make you regret it” when so-called home care was not all it was supposed to be. Yes, I tried to do something about it. I still hope she wasn’t made to regret my attempts. She wanted to die at home, but did so in a protracted way in hospital.
A friend with cancer who put everything in place with the hospital’s team so that when she was dying the palliative care team would come to her home. They didn’t come. She finally died after several miserable days in hospital.
An in-law with Alzheimer’s who hated her final years in a care home, despite being well looked after, and who died there after a week of being mostly knocked out with morphine, but with bouts of ‘get me out of here!’ in between.
A gentleman friend who knew he was at the end of his life and was at home with treatment, but who found it difficult to cope with his daughters who were waiting around for him to die. He felt as if he should get on with it.
A close relative who having been told that she was dying in hospital told them to get on with it, then had no further chance of speaking to her relatives as she was so highly dosed up with drugs for the week leading to her death.
A gentleman who having just received a diagnosis of a terminal illness who said that he had the means to end his own life and would do so now rather than wait until he was suffering.
A man with dementia who starved himself to death as he couldn’t bear living in his so-called care home any more.
It seems to me that we can’t trust other people when it comes to our end of life care. I have heard that hospices fare much better than hospitals, but that they can only take very few people as there are never enough spaces, and they are always charities.
I don’t know what the answer is. I know many people want euthanasia to be readily available, but we surely can’t trust people with that either. I find it scary. I’ve seen healthy pets ‘put down’.
I see all human life as having value, we can minister to others until our dying breath. Yes, I’ve seen that too. But on the whole, we’re not getting it right, are we?
There are two issues here, the longer term care leading to death, and those final weeks before we go.
What are your thoughts and experiences? I can’t catch a vision to aim for. Can you?
A friend recently died in her sleep, having gradually deteriorated mentally and physically in her nineties and been looked after in a well-run but expensive care home in which the staff really did care. That’s as good as it gets.
But some of the memories in my mind rattle and trouble me:
An outspoken aunt who was reduced to saying quietly to me “you don’t complain dear, they make you regret it” when so-called home care was not all it was supposed to be. Yes, I tried to do something about it. I still hope she wasn’t made to regret my attempts. She wanted to die at home, but did so in a protracted way in hospital.
A friend with cancer who put everything in place with the hospital’s team so that when she was dying the palliative care team would come to her home. They didn’t come. She finally died after several miserable days in hospital.
An in-law with Alzheimer’s who hated her final years in a care home, despite being well looked after, and who died there after a week of being mostly knocked out with morphine, but with bouts of ‘get me out of here!’ in between.
A gentleman friend who knew he was at the end of his life and was at home with treatment, but who found it difficult to cope with his daughters who were waiting around for him to die. He felt as if he should get on with it.
A close relative who having been told that she was dying in hospital told them to get on with it, then had no further chance of speaking to her relatives as she was so highly dosed up with drugs for the week leading to her death.
A gentleman who having just received a diagnosis of a terminal illness who said that he had the means to end his own life and would do so now rather than wait until he was suffering.
A man with dementia who starved himself to death as he couldn’t bear living in his so-called care home any more.
It seems to me that we can’t trust other people when it comes to our end of life care. I have heard that hospices fare much better than hospitals, but that they can only take very few people as there are never enough spaces, and they are always charities.
I don’t know what the answer is. I know many people want euthanasia to be readily available, but we surely can’t trust people with that either. I find it scary. I’ve seen healthy pets ‘put down’.
I see all human life as having value, we can minister to others until our dying breath. Yes, I’ve seen that too. But on the whole, we’re not getting it right, are we?
There are two issues here, the longer term care leading to death, and those final weeks before we go.
What are your thoughts and experiences? I can’t catch a vision to aim for. Can you?
Comments
I’d love to have a happy vision, but right now I find it a depressing one - apart from the hope of heaven at the end of it all.
I can only hope and pray that the experience of folk in our local council-run care home is better than that described so far in this thread. I've not heard anything to indicate that it isn't, but I suspect (hope?) the closeness of the community means any unkindness is more likely to be noticed.
During the current pandemic, this room isn't used at all because it is attached to the old-age home and that is under quarantine. People are taken through by ambulance to the isolation wards of the state hospital two hours drive away.
I find the isolation of Covid-19 one of the hardest things to deal with, because dying alone makes everything harder for the person dying as well as family. And many older Catholics want the Sacrament of Healing and there is no substitute for that.
That comes the nearest that I can imagine to perfection at the end.
Thing is though, each system put in place is only ever going to be as good as each person.
Having worked in end of life care I was always surprised (and often shocked) at the great big difference that even One member of staff can make.
They either pulled us up to their level, or allowed a sinking of standards.
I would like to hear more of what you have to say @Simon Toad
It seems to me that the management in this area cannot rely on complaints as a marker to dissatisfaction, as few will pursue complaints when grieving for loved ones, and those who do are sometimes unrealistic in what might have been achieved. The leadership must therefore be sensitive and observant.
But they (no doubt aided by remaining staff) also tried to manage me out of the business by calling me into the office every couple of weeks for about 6 months, until I called the union in and we agreed that I too should move to another house. I remain there, happy but damaged. I agree that I needed to be moved, but I would have appreciated them coming out and saying so rather than putting pressure on me to quit.
Happy staff members go a very long way to making life bearable for people in supported accommodation, be that aged-care, hospices or disability. If you are happy, or at least content, you will tend to do your job with more attention, look out for extra stuff to do, and seek to do stuff that pleases your clients. Happy staff members should be a key goal of managers.
My task as a support worker is to discern what a client wants, generally or in a specific instance and try to facilitate that. This is relatively easy when a client has the capacity to speak, and gets harder and harder as my capacity to understand the client diminishes. Learning the skills needed to discern a client's wishes, and that a client's wishes are always limited to time and place and are not immutable, is very important. I hold a trade certificate in Disability work. The certificate covers this, but as lawyers do continuing legal education, so I think should we. And communication - listening and observing and facilitating - should be right up there on the list of topics.
Its not just unhappy workers who can slip into bad habits. The most experienced workers are also liable to find ways to cut corners, and we are better at covering our tracks. I am dissatisfied with what is happening with a work colleague. There is stuff he is skipping that he just shouldn't be skipping. I make sideways comments, I link certain things with what he is doing obliquely, but I know what is happening in his personal life, and I know he is disappointed that he hasn't got a promotion. I also know that another period of upset at work would be very difficult for me. So the clients suffer a drop in the standard of care they deserve. Line Managers should work shifts in the house. They would see the problems I see and be better placed to deal with and respond to staff dropping their standards. Our line managers manage more than one house. This is bad.
That's enough to be getting on with. In our job, we are with the same people in the same house. End of life care would have different but similar issues I think.
The 'us and them' has come across as one of the issues which needs to be stamped upon. It's so easy to fall into and once established in the culture it becomes difficult to extract.
I started working in a residential care home when I was 17 years old on a youth training scheme and loved the work, I was in a pleasant, small private home run by a nurse and home economist who were present every day and that made a big difference to the atmosphere (friends on the same scheme had a far less encouraging experience in bigger homes with distant management). But even there I could see the ‘them and us’ culture with the older carers asserting authority and not treating clients as individuals. Lifelong learning and good management support is important to counter this.
In the uk and about fifteen years ago now, I worked as a nursing auxiliary / support worker / health care assistant .... the term differed depending on who booked me; social services, a health dept or the patient themselves . I suppose the old fashioned term is a night sitter.
A goodly part of my shifts involved hospice care at home or the equivalent . It was such a privilege and without doubt there were many holy moments.
But people who care for other people at that most crucial time Must be supported and paid properly.
Training is a whole other conversation. In my experience, those who worked out of a building or were straightforwardly employed by an entity and not an agency.... had far better training.
I echo @Simon Toad and @Heavenlyannie in their highlighting of the importance of good management. I was fortunate, some of my colleagues with other agencies, not so.
I ve given much thought since that time. Like @Raptor Eye , I think we have not got it right.
The why is a whole other matter though. Is it because as a society we are squeamish about even talking about it?
Certainly that work was among The most rewarding for me personally and something that I have not hesitated to recommend to others.
My grandmother went to pieces. She started drinking and refused to look after herself or allow anyone, either family or professional to look after her. Early in 1973, my mother and her brother had her committed to a mental hospital where she died the day after admission. I always suspected that she died because she was regarded as a nuisance by the staff. I hope I was wrong.
Thanks so much.
I'm physically active so I can be independent as long as possible, but of course, that can change in a moment at any age. If I do end up in long-term care, my best hope is to be able to read, listen to music, and enjoy legal Canadian marijuana until the end.
I've lost 2 best friends and 3 of 4 parents of our's are dead. The last of our parents is dying slowly right now as I write this. Perhaps it is due from coming from a small population base place, where we're likely to know various of the people: all of the care past and present has been attentive and kind. Today I spoke to the unit clerk twice, a dietician and and speech language path (re swallowing): they all called me. It is difficult right now to visit hospital. You get general clearance and then daily re the virus. I'm going tomorrow when there won't be interruptions with all of the services and consultants. We've got all the instructions shared among us re DNR and DNI and we all agree; a key issue is knowing in advance what my father thought and wanted and how he wanted us to decide things. The only problem is that my sibs are far away, so the burden is all mine re them. The virus means even were they to get here, they have 14 days of quarantine before they could go to hosp.
Before hospital we had the low fee homecare and more expensive private version so daily visits from people were possible to share the burden of care beyond family; we had this with 2 of the other parents also. Also kind and generous people.
I lost others I was less close to pre-1990, and I have thought that the training in general for nurses, doctors, other health professionals has emphasized "soft skills" a lot more in ther past 30 years. Better attentiveness to the person over the condition or illness. For some decades, I taught such things to physicians and other allied professions; I think others have done a better job since or there has been a change in the zeitgeist.
I have no doubt that medication to maintain airways so as to not have the dying person suffocate and the various opiates related to morphine are passive hasteners of death for many; they have been for most of those in my circle. This is kindness as well. It is not active euthanasia, it is palliative sedation. All that needs to be said has, the long sleep awaits, and path is provided without creating fear. We end up with on-call clergy usually. Anglicans have had post-death prayer with Roman catholic priests, Salvation Army, Baptists. In my mind, they stand in for each other, like a priest does every time when preparing communion and saying the fateful words about body and blood.
I'm hopeful that LSD and magic mushrooms are back in the pharmaceutical compendium by the time I need palliative care. I've always been a little proud that much of the original therapeutic use for LSD research was done in psychedelic* Saskatchewan, and that I was taught by some of the people involved.
I'm troubled to hear of these difficult stories some of you tell, and I've heard some others, including from here before. Don't know, can't explain, perhaps I've seen so much death since age 8, and later walloped by loss of 12 people at once before out of my teens. Intentionality about life and death have always seemed required to me, connecting with others also required, and maintaining composure whatever happens.
*psychedelicacy is the original word by Osmond, and claimed by Sask.
Talk to your loved ones about it openly, and ask them to speak up and do something about it if they can see that all is not how it should be. A friend discharged her husband from a hospital and had to fight for care at home, but she won.
My prayers for you continue.
I have tried talking to my daughters (I'm not sure what they understand) and my dearest friends (who do understand). I have a few more things to do, and then I can be ready to go. (I really want to wait until things can be reopened, though; there's all sorts of choral music in my funeral instructions, including a piece commissioned in my honor, and I worry about how long it will be. I also want to vote in November.)
Thank you for your prayers. They are deeply appreciated.
You might source some talking books for times when reading may be difficult.
Please don’t worry about your funeral. Once your wishes have been recorded, those who are going to attend must tailor it according to their needs.
I hope you will get to vote, and that it will go the way you want it to.
Hospital. Allowed in if it is near death. Very stressful to get into the building and up to the room. Takes between 15 and 45 mins. So I basically lived there with forays out at odd hours to wash up myself, eat, sleep, not really with enough clear thought to pray but sort of like the whole thing was that. I knew his pre-hosp vital signs, and could bench mark with them. Could see that his oxygen was low, his heart rate up, and asked for more O2 so he could catch his breath, brain would work, minimal talk possible. He wanted "no more fiddling" and I used this statement with staff when then offered an additional IV for other than medication and when they wanted to catheterize him. He'd pulled out prior IV lines, so I knew what to advocate. --my basic message is that because I was there to advocate for what he wanted which was "comfort care". I don't know if there's a word, people say a "good death" but that's not the right term. More like a death with control and keeping his dignity, being okay with what was happening such that he kind of went with it. Such that his death trauma would not require heavenly psychological therapy or however that might work, whatever post-life actually holds. I posted on the Aging Parent thread in AS that he chose to die on the anniversary of his wife, my mother's death more than a decade ago, and we had a video call with everyone present, not knowing that this was his time, but it was. He had a little conspiracy with God I suppose and they wrote his last scene and lines together. That's all I've got.