Does hospice care help?

[Mike3018]

Sorry for this long message, but context is important. Thank you in advance for reading this, and thank you for any perspectives and insights you may have to offer.

My Dad died seven weeks ago. He went into hospital after being bedbound at home for a couple of weeks. He was waiting for a cardiology appointment, so we put his growing tiredness and weakness down to his heart problem, and anticipated he would soon get treatment. We tried to get it moved forward, but we could never convince the cardiology department of the urgency and only ever had a few phone calls. Then, one day, we found Dad in severe pain and I called an ambulance and accompanied him to A&E. He was admitted, where they discovered he had lung cancer! But he was never moved to oncology because of a series of incompetent and avoidable mistakes, and finally died on the ward of pneumonia, four weeks later. He lost his voice after two weeks, so even when we began to realise this was the end, we couldn’t talk to him and he couldn’t talk to us. And through it all, the hospital kept promising they would discharge him and continue treatment as an outpatient! It was like they were blind to the reality of his situation, and because of that, they continually poisoned our thinking with this false hope, that made us question the evidence of our own eyes.

After two to three weeks, my Mum asked about hospice care. Her suggestion was rejected. On the night he died, Mum asked again, hoping he had time to get out of that place and into more comfortable care. “Let’s see how he is in the morning” was the reply. He was dead before the morning shift arrived. We were with him until the end, mostly on our own, occassionally attended by staff who seemed convinced he would get over it and recover in the morning. It was difficult, traumatic, heart-breaking and I still see it clearly in front of my eyes. I think we all have a form of PTSD from it. We were in shock for days, afterwards and cannot process it, even now.

I keep wanting to time travel back to March and do it all again, but better. To be more pushy, to get PALS involved or legal services, to camp outside the consultant’s office door until he agrees to talk to me directly, instead of only turning up outside of visiting hours and talking briefly to Dad, who was horribly sleep deprived from the noise and chaos of the ward and couldn’t remember anything.

I have a fantasy that if I could just get him up to the oncology ward, he might have had better care. But I spoke to someone who said they had achieved this, only to find that the standard of care on the oncology ward was no better than on the general medical ward!

So, I have a couple of questions that will hopefully help give me perspective on all this. These questions are for people who have succeeded in getting their loved ones into hospice care of some kind.

1. Did it make a difference to how your loved one ended their life? Was it easier, more comfortable, less painful? Was the care better than what they might have had if they’d stayed in hospital?
2. Did the experience of hospice care help you to avoid any symptoms of trauma or guilt or other problems, such as the one’s I’ve mentioned, which have made the whole experience so much worse for us, the survivors? Has it helped you deal with the aftermath, with carrying on living, with coming to terms with what has happened?

Thank you for your answers.

[CaS16]

@Mike3018- firstly I am so sorry you and your family had to go through this and I’m so sorry you have lost your dad.

My husband passed away in Feb this year after a 15 month battle with cancer. He was under the care of our local hospice for the last 9 months of his life, on the fringes to start with, but they were invaluable ( along with the district nurse team) in the last few months. Via this he was able to pass away at home. I’m going to leave it there on that part because I can read the trauma you are going through and assessing ifs, buts and maybe’s based on other’s experiences so soon after your loss will do your mental health no good.

What I will say is do contact PALs now with every shed of information you have - dates, timelines, names etc and layout your complaints re your dad’s journey chronology. I did this re oncology’s failings, which led to my husband being in hospital for 17 days with pneumonia and a collapsed lung this time last year ( which shouldn’t have happened) and their - oncology -abandonment of him ( and myself - to the point of a breakdown) whilst he was in there. Even the medical teams treating my husband were in disbelief at how shoddy oncology were; we were lucky that one respiratory consultant ( on his second admission - after a failed discharge) was not going to let it go and he got the support in and out of hospital that my husband needed.

I was contacted by PALs 48 hours after sending my email - they wanted to arrange a meeting for about 7 weeks after this but I put my foot down and said ‘no, now!’. During the meeting with the lead oncologist and lead nurse, my husband (and I ) were able to express and highlight every single failing - each was was upheld. My husband stated he wanted nothing from it, just that nobody else had to go through this.

After this meeting - of which we received a full recording - we were able to draw a line under the whole horrendous episode - and focus on the time he had left.

I really hope you have the strength to take this forward if that’s what you need to do and you get the resolution you and your family deserve.

Please take care of yourself

[Plutorising]

I agree with @CaS16 that talking about experiences of hospice care will only compound the feelings of grief, and will enable you to go down the rabbit hole of if-onlys.

There are pros and cons to a hospice, one that you wouldn’t have a choice in which area. My Mum was in a good hospice, but several miles away. She was there because the cancer was untreatable.

Additionally, even though the care she received was good, a) the initial hospital stays, then home care, before the referral, was hideous, and b) there were no staff available when she was actively dying, because she was one of 4 patients passed away throughout the same day! Only 8 beds there, so 50% of patients! Me and my sibling were alone when she passed.

The hospices are just as horribly understaffed and stretched with impossible workloads as hospitals are, if not worse, because hospices are vastly under funded and rely on donations.

Whilst this was all happening, my Dad got diagnosed with a terminal illness too. It was also horrendous as the hospital stuck him in the frailty ward, didn’t bother to investigate the infection, and weren’t too concerned about the strokes he was having. Sent him home numerous times, only to be readmitted.

It took an entirely different hospital to acknowledge the major stroke and infection, which had turned malignant, and even then there was a doctor’s strike, so he was there longer.

It was only when he actively refused treatment (in full mental capacity) that they had to admit him to palliative care in a nursing home. A good home but same outcome, me and sibling were there when he passed.

Both parents passed only 4 months apart.

So even when our loved ones do get admitted to hospice or palliative care centres, the dying is the same, and it still doesn’t alleviate the trauma. Not by a long shot.

[Plutorising]

Adding to this, the worst one I’m realising, and it’s a surprising one …. Dying at home.

My partner is going through this, he refuses hospices and hospitals altogether, has weeks left. He needs 24 hour care, he’s completely bedbound, in pain, and struggles to talk (glioblastoma)

I could write a book on all the disasters that occurred with the NHS, hospitals and palliative care, all the different teams that don’t communicate with each other, or to us, the endless delays with medication and assessments, and the general cluelessness of the GP.

It’s only been three months of this!

If I ever end up gravely ill, my home is the last place I would die in. Not with the current NHS as it is now.

[CaS16]

@Plutorising this is awful and I’m sorry you are going through so much!

Again, without expanding too much to avoid rabbit holes for others who may read this, I have heard different experiences of hospices and and passing at home.

I feel, although completely the wrong word, lucky that my husband received the support and treatment he did in his final months, weeks, and then days under the hospice and community teams. He wanted to be at home from the day of his prognosis, this was always his plan, and once the hospice were on board they made this possible. He passed peacefully, calmly and ( so far as I witnessed) pain free and we were together the whole time. Obviously I don’t want to paint it as a fairytale as nothing could be further from the truth watching your husband of 27 years dying. Before, and on a few occasions whilst, he was on a driver for the last 5 days, the district nurses and rapid response would be there any time night or day for medication needs, and the hospice again, any time, for advice or even just a chat; they would call me regularly to check in.

I think it’s worth noting that grass roots staff do their very best with what they are given, I think it takes a very special person to do their jobs, and it’s not one I could do! But as you have so very rightly said, it all comes down to funding ( always about the money!) and the non-existent communication systems within the NHS.

Sending you strength and

[Sparrow2]

Mike3018, I would avoid the ‘ifs.’ You did what you could in a difficult system where the pathways are not clear, bed space is limited, communication between hospital and hospice is not always clear. My Mum died unexpectedly in a hospital on the day that she was due home and had been assessed as medically fit. My uncle died a few months before my Mum and in a hospice. He had vascular dementia and strokes. We had been back and forth to hospital many times over 2 years with him. My Mum and me were closest to him. From my experience, I was told by the hospital that he had to be well enough to travel in the ambulance, but have a limited time left to enter as an inpatient. I had already registered to access hospice wellbeing activities at home, which helped speed things up as he was already registered. He did not recover to access the activities, but rapidly deteriorated and entered as an inpatient. I received 2 end-of-life phone calls from the hospital and I asked if he was pallitative then I would like him to go in the hospice. The medical doctors had to refer him to the pallitative team at the hospital who then liaised with the hospice. I used to ring the hospital and hospice everyday to see if a bed became available. When he arrived at the hospice the picture that they had received from the hospital did not match how my uncle was. The hospice was caring and the follow up support that I have had has helped me immensely. Mum died in a hospital and although they were understaffed with doctors, I cannot fault the nurses who were caring. I guess everyone experience is slightly different. I know that I did the best for both. Try not to let the guilt monster get to you, you also would have done the very best you could.

[Plutorising]

It’s reading posts like these that is making me very determined to get a Lasting Power of Attorney (health) put in place for myself, despite that I’m “still young” (laughable, I’m nearly 50) and that I have no major health issues (yet. 30 a day smoker for decades, switched to vapes). You have the option of having it activated when you are no longer able to make decisions.

I feel the first seeds of if-onlys seeping in already myself, after the past horrendous few days with what my partner is going through, choosing to die at home.

Rather not go into it, let’s say lack of dignity is a big understatement, seeing and hearing things I can’t unsee or unhear. Not even going to tell his kids, just the “PG version” otherwise it would devastate them.

The carers have been brilliant, and they are in agreement about the dire state of the NHS.

I wish I convinced him to stay in a hospice - or palliative care home (are they just for the elderly though?), he won’t have any of it, far too stubborn, and its all about “respecting their wishes”. So here we are.

And of course, he has no LPA. Well, he was healthy, functional, and working only 3 months ago, and LPAs were a thing to do tomorrow, which we all know, never comes.