End of life care

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?


  • IgnatianIgnatian Shipmate Posts: 28
    Sorry about your experiences. I've seen some case where hospice care, delivered in-home, or in a nursing home, isn't much better. For example, nurses and social workers would talk by the patient's bedside about him, with no regard for the fact that he might perhaps understand what they were saying. Then there was the delay in getting morphine for the patient. If there's one drug that hospices should always have available, that's it. Hospice nurses are not all the caring angels we think they'll be.
  • Thank you @Ignatian, your experiences sound dreadful too.

    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 don't have much experience to draw on in this regard. I know my wife's grandfather more-or-less decided that life in a home wasn't worth the effort and passed within days of being released from hospital. For some folk I think the loss of independence is too much to bear, while others find ways to adapt. My honorary-great aunt is in a home, still in possession of most of her marbles and (when not confined to her room by social distancing) spends her time organising small worship services for the residents, and plotting periodic escapes to visit my parents.

    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.
  • I agree that our own attitude makes a big difference @Arethosemyfeet, but the attitude of those who are supposed to be caring for us seems to be more of an issue than our own. We can quickly be browbeaten and lose the will to live when we are given poor or harsh treatment, or neglected.
  • Gee DGee D Shipmate
    There is a hospital in the next suburb to us, where we both want to spend our last few days. They specialise in end-of-life care, know how to administer enough drugs to keep pain to a minimum and when to stop what is simply prolonging the inevitable. In the end, they even cut out water, just using enough to keeps lips moistened. Also plenty of space for relatives visiting for longish periods. Our parents all died there, and none of us could fault them.
  • MaryLouiseMaryLouise Purgatory Host, 8th Day Host
    We have a small hospice (known as the 'cancer room') in our farming town and from time to time I do shifts there reading to or just sitting with people who are close to death -- this is part of a pastoral outreach but many patients are transferred to hospital wards or frail-care centres for better pain management, so the hospice isn't used often. Those who are in bed there are often people I know -- old friends, neighbours, fellow parishioners. If people are not in severe pain or heavily sedated, they often appreciate the time to reflect on saying goodbye to family members (it is amazing how many old feuds and estrangements can be healed with a few words or a smile right at the end of life) or listening to music, or just knowing someone is there holding their hand. Touch is so important. It's a peaceful place and some say it is the closest thing to dying at home they can imagine.

    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.
  • @MaryLouise thank you for saying all this.

    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.

  • My grandmother died in a hospice, and I have nothing but praise for their care.

  • Thank you for the positive posts, which give me hope. They point to specialists who care, and places set aside for those who are dying.
  • I think one of the most important aspects is having the right people providing the care. That is a reform worth pursuing: learning how to train and retain quality staff, and perhaps learning too how to identify and remove staff who aren't suited. It's good to remember too that people who make mistakes sometimes learn from them. Compassionate management might lead to compassionate staff. There is lots to say here but I will leave it at that.
  • Yes, I think good compassionate management is the key, too, as this is what will create a compassionate culture among staff. I teach an Open University module on death, dying and bereavement (I’m an ex-nurse) and the majority of my students are health care workers in homes or in the community. One of the main themes on the module is the concept of a good death and they are passionate and thoughtful about it; the difficulties of facilitating it in a time of covid was something often brought up by them at tutorials this year. These are carers who are seeking training and education, either off their own backs or with employer support (they are on a Health and Social Care degree programme); more carers should be encouraged to do so.
  • It is good to know that excellent compassionate management training is available @Heavenlyannie thank you. I agree, not only more should be encouraged but all need such a module who are going to be providing health care for elderly and dying people.

    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.
  • My experience is bitter and relates to disability. My bitterness colours my opinion,so I will say a little about it. About 10 years ago I facilitated a client making a complaint to management about the general atmosphere in the house of 7 people where she lived, in a facility comprising three such houses. I added my voice to hers, and also related a particular incident of problematic behavior by a staff member to a client. Management responded well to that complaint. They instigated an investigation into the house using an in-house specialist who sought to understand the concerns of clients. They investigated the specific incident I disclosed, and the staff member was moved to another house.

    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.

  • One more thing about experienced workers: We think we own the place, and we set up things the way we like it. But that can be problematic if we don't include the clients in working out how things should be. And lots of workers have an 'us and them' attitude to clients. Again,line managers on the floor will help with this.
  • Raptor EyeRaptor Eye Shipmate
    edited June 2020
    Thank you so much for this @Simon Toad It should never be that those who speak up are punished for it, but it's so often the case that they are.

    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.
  • Simon Toad wrote: »
    One more thing about experienced workers: We think we own the place, and we set up things the way we like it. But that can be problematic if we don't include the clients in working out how things should be. And lots of workers have an 'us and them' attitude to clients. Again,line managers on the floor will help with this.
    Goffman’s binary management aspect of a total institution (we teach institutionalisation at foundation level). This is the idea that the staff and the residents are treated as different social cultures and there are power aspects involved, as carers control the environment. As you say, there needs to be co-production with residents, it is after all their home. Recurring features in all our health modules are autonomy and empowerment of clients as they are essential for safe and appropriate care (something I am passionate about as my interest is in disability studies and I’m currently doing doctoral research looking at empowering students who have mental health challenges; I have bipolar disorder myself).
    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.
  • CathscatsCathscats Shipmate
    A couple of weeks ago I "attended" a seminar from Highland Hospice entitled "Last Aid" which was really excellent. It was aimed mainly at friends and family to let them know about what to expect when you are emotionally supporting (or physically supporting) someone who is dying. As clergy, I knew a fair bit of what was covered, but it would have been really useful for me in my training, and there is always more to learn. The people who "attended" who were not there professionally found it really helpful, and quite emotional - but in a good way. I think I have the "handouts" from the morning, if anyone wants to PM me.
  • That’s interesting @Cathscats thank you. I wonder whether some people avoid training around the topic of being near to dying people because it is so emotional and disturbing. And yet it is so important.

  • 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.

  • When I imagine the ideal care worker, I think of the nurse who cared for Anne Elliot's friend from school. She features in a couple of scenes in the 1990's film adaptation of Jane Austen's Persuasion. Its how Anne confirms her suspicion that the cousin paying court to her is a cad.
  • Here is a new story in the UK discussing what the government are thinking of doing to change the way we finance social care. I'm not sure if it is relevant to this thread, but here it is.
  • TelfordTelford Shipmate
    In 1972 my grandfather died in hospital. He had cancer and was in what was described as a 'Death Ward' No patients ever came out alive. The last time I saw him he was almost a skeleton. I visited the next day and his bed as empty. If he had been helped to die, I am grateful to them.

    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.
  • Oh @Telford , that is heartbreaking.
  • TelfordTelford Shipmate
    Ethne Alba wrote: »
    Oh @Telford , that is heartbreaking.

    Thanks so much.
  • Actuarially speaking, I will likely have no immediate family when that time comes, so I will be dependent on the kindness of strangers. And I'm not rich, so I'll get the lowest level of care. Bedsores terrify me. Ideally, I would much prefer to be killed and eaten by a bear or cougar while out birdwatching.

    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.
  • edited July 2020
    The problem is the cougar particularly, and depending on type of bear, will start by eating their meal while it is still alive, usually the soft tummy bits. I had wondered if hanging, drawing and quartering executions were derived from seeing predators in action.

    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.
  • RossweisseRossweisse Hell Host, 8th Day Host
    I have Stage IV cancer and require 24-7 care (I want my privacy back!); I know I'm looking at end-of-life care in the not-too-distant future. I am not afraid of death, but the process of dying really frightens me. I would be grateful for suggestions from those of you with experience in this field. Thank you.
  • Raptor EyeRaptor Eye Shipmate
    edited August 2020
    @Rossweisse my heart goes out to you. Ask your health professionals the direct questions about the process. Ask what will be done to help you through each stage, and what side effects there are likely to be. Visit the hospice and/or palliative care team if possible, observe and ask questions. They should be ready to speak to you about your needs, be attentive and sensitive, and give you the time you need to talk it through. If you get the wrong vibes, ask what other options you have, and go from there.

    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.
  • RossweisseRossweisse Hell Host, 8th Day Host
    Thank you, @Raptor Eye. I want to stay in my house, with my cats, my music, and my books (although I don't know how much reading I'll be able to do). I want to avoid anything that will mess up my brain until the pain grows so pronounced that I can't focus anyway.

    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.

  • Bless you @Rossweisse I hope and pray that you will be able to find and fund a palliative care team who will look after you at home when the time comes, a team who will talk it through with you now and write a care plan, who will be sensitive and caring and well trained, and who will stroke your cats and be ready to play your music. This will help so much to alleviate your fears.

    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.
  • edited August 2020
    If it helps at all to tell a bit more story @Rossweisse. I've sat with now 5 people I'm close to through their end of life times. In the most recent, just less than 2 weeks ago, I'd talked to him about what he wanted, which is all in theory in the beforehand, and then intent versus specifics have to be understood I think. We'd kept him in his suite, and had public homecare, and private homecare both come in. We'd arranged meals to be brought. I calculated that it cost in the range of $2000 per month. This is on top of his rent and other, so about $4000 per month. We ran that for about 6 months. The cost of LTC (long term care) is up to about $4500 here, based on income, and goes to nil if there's no money. So we actually technically did it for less. Which isn't true, because all the additional things add up, and it's actually more. The difference is that 2 of us could be designated visitors with strict isolation protocols for ourselves versus no visits in a LTC place.

    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.
  • I don't have words, @NOprophet_NØprofit and @Rossweisse but I am sitting quietly and listening to this conversation. :votive:
  • Gee DGee D Shipmate
    Rossweisse - I'd like to be able to face my final times with the courage and fortitude that you are. Prayers for you as always.
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