Hospice at home - expectations

[RedFrogsRule]

My close relative has just died. They were referred for hospice at home about 4 weeks before death. Stood down as they rallied. Continued deterioration but we struggled to get the team back in.

I never felt that we really met them properly. The two conversations I had were me questioning whether my relative was close because I felt they were but I wasn’t given this clue from anyone else and begging for some help. Relative had stopped eating 4 weeks previously and stopped drinking three days previously. (Saying this it seems fucking obvious they were dying but the nurses made me feel I was being premature) No meds were possible because they’d stopped eating and we’d requested pain relief and nausea meds. Eventually after what seemed like protracted negotiations over whether district nurse or hospice nurse should do it a syringe driver was put up and they died 12 hours later. I think it was uncomfortable and distressing.

Is this normal?

The decision about when to stop actively striving to keep someone alive is a challenge. My OH had advanced PD and, as well as his total physical dependence, he was very paranoid - he thought people were trying to cut him up and dissolve his skin. He was in a state of unremitting terror - every possible treatment was tried and all failed.

One morning he had a temperature and was semi-conscious - GP was called and after he saw my OH he and I and 2 other nursing home staff went into another room to discuss what to do. I straight away said that I wanted him left in peace, and that, as I had Power of Attorney for his health and welfare, I wanted them to respect my wishes. No-one batted an eyelid; they just ordered the end of life pack and that was that.

None of those present raised any objections or argued that he should be kept alive in the terrible state he was in. I was so relieved - I really did not want to be fighting his corner for some dignity. Lord knows I had been fighting his corner for years in one way or another, and it was a huge relief to have everyone onside.

@Mischance. You are exactly the relative I’d want fighting for me at EOL.

@Purplewithred I did give feedback but the thread has made me ponder wider strategical issues around provision of palliative care and contacting them. That could definitely be improved. We never knew who to call and whoever we did directed us elsewhere in a circle. I would have benefited from a relationship with one team. We had hospital palliative team, hospice community team, district nurses, practice nurses, hospice at home nurses, GP, consultants, medical, surgical and palliative. She died within 9 weeks of first diagnosis and in that time we saw 10 discrete teams and never knew who was ultimately responsible for her care. In the end it seemed to be me but without the drugs to help her.

@RedFrogsRule I do hope you've fed back that lack of joined up services to both the Hospice and if you can bear it to the local Clinical Commissioning Group www.nhs.uk/Service-Search/other-services/Clinical%20Commissioning%20Group/LocationSearch/1. They are likely to have an end of life team who are supposed to coordinate services - Integration is the big push in the NHS - and your case would be a very informative case history for them, if you could bear to share it. Also try your local Healthwatch.

Oh goodness RedFrogsRule - don't get me started on the lack of joined-up care.

• my OH needed an external urinary catheter (Conveen). District nurse not allowed to prescribe this. She referred to Bowel and Bladder service (B&B!). They sent a letter 2 weeks later offering an appointment at the clinic - I said I had no way of getting him to the clinic. They sent a letter offering home visit 2 weeks later. Home visit takes place on a Friday before Bank Holiday - she gives me two of the condoms (random size) and said she would write to GP to prescribe more supplies. They need changing every day - one got wasted as I practised how to put them on, so back to square one after one day. Wait for GP to get instruction to prescribe; wait for them to be dispensed. Weeks went by during which he was wearing pads unnecessarily and getting very sore - he weighed about 6 stone by then.

• OH needs enema - district nurse says can only do this if GP prescribes. During the week's wait for this he had faecal impaction and was in desperate pain. Required 111 out of hours doctor to come and do very distressing manual removal of faeces.

• physios visit - wiggle him about a bit and say they will contact neuro-physio. Weeks pass. Neuro-physio arrives - wiggles him about a bit and suggests exercises that he is unable to do because he got too out of breath even trying them.

• OT arrives - supplies some aids and a hospital bed which arive slowly. Refers to "specialist OTs"

• specialist OTs arrive and say he needs a tracking hoist. We wait and we wait and we wait, then I manage to track them down and ask what is happening: "Oh no, we have not ordered this; it was just a suggestion." In the meantime carer hurts her back and leaves.

I could go on.....and on.........and on. And that is before we even start on the funding issues/battles............

It all wore me down and in the end he went into a nursing home - a very good one that cost eye-watering amounts of money - I used up all his savings paying for this level of care quality.

And still - nearly a year since his death - I am battling over the money issue with a hearing due any time.

It is appalling how the burden of dealing with a very sick loved one is compounded by the so-called "care" services.

@Isadora2007 @Susiesue61 It is reassuring to know you are both around.
Can I ask two questions please?

The technicality about drivers, which everything I hear about leads me to believe are as hard to get as bags of diamonds. Why the reluctance and why the delay?

But the general question is about defending the indefensible, regarding bad care. Shoot the whistleblower, to protect the guilty, is automatic procedure.

It has long bothered me, and good people like you need the situation reversed. You, and the people you want to help, must have a cast iron protection. I think I have the solution. What if everybody was seriously afraid N O T to report when they know, or could reasonably have been expected to know, there is something amiss?

At present, any whistleblowing surgeon or care worker or nurse must risk being drummed out of his/her profession, for reporting something wrong. That's the reason scandals and deaths go on happening, even though almost everybody including the hospital porters know perfectly well what is going on.

Instead, I would propose a new law with three parts
A)Having totally independent users' organisations to consider poor practice, instead of, as currently, allowing surgeons' or nurses' or care managements' own unions and organisations to 'mark their own homework' and make the decisions to remove the whistleblower and let the offender go unchecked.
B) Having extensive use of independently checked cctv to protect users and protect innocent workers from mistaken or wrong suspicions. (cctv is compulsory in slaughter houses in England, but not in care homes)
C) Having the legal obligation to report known or probable wrongs, in order to protect one's own future, because failure to do so would make one legally deemed to be jointly liable and complicit in the wrongdoing. It would be similar to the obligation to do something about any serious crime, such as knowing a bomb was being prepared, or knowing your pals were taking knives or guns to seek out and murder a rival gang, or knowing that someone is molesting children. (Or knowing a tower block is being built with dangerous materials) Knowledge of serious wrong doing, before or after it happens, carries the social and moral obligation, and should carry the legal obligation to prevent if possible, to refuse to participate if at all possible, and to blow the whistle afterwards. In some situations, (and probably there should be more) the law says those indirectly or directly involved are all held jointly and severally liable, and all will be punished as colluding.

I imagine that all the surgeons and nurses and others who knew very well that children were being killed by one of the rogue surgeons in that heart hospital would have been delighted if the law had meant they were afraid to keep quiet, in case they finished up in court, instead of being afraid to speak out, in case they finished up sacked by their union for 'snitching on a colleague' .

My father's GPs failed to refer him to palliative care. We got his notes and it was written on there at every appointment to refer him but it never happened, despite his cancer already being very advanced by the time it was diagnosed. The Macmillan nurse only ever spoke to him over the phone which wasn't very successful as he had poor hearing (this was pre-covid). This led to the GP calling for an ambulance when he was dying even though my father wanted to die at home. He died in the ambulance on the way to hospital and my mother has felt guilty since about agreeing to him going in the ambulance.

Less than a year later my MIL who was also terminally ill came to the end of life stage. She also wanted to be able to die at home, and we wanted to avoid what happened to my dad happening to her, and also to make sure that the medication would be available to her at home to make it as painless as possible. The Covid situation was also an additional complication by this time. We got advice from Compassion in Dying who explained what help she would be entitled to, and how to access it through the GP. Her GP and the hospice at home team and district nurses were fantastic about making sure everything was done to enable her to stay at home and made as comfortable as possible. My DH who was caring for her had numbers he could call 24/7 and the communication was great. This was despite covid. The contrast was amazing.

My DM was very angry after my Dad's death because he hadn't had the care he needed and no-one had acknowledged he was close to death. It was obvious to us from spending time with him. But in the end she wrote one letter of complaint to the GP practice, and stipulated she never wanted to see the GP who gave my Dad such poor care. Then she put it behind her for her own wellbeing. My MIL's death which was as good a death as it could be also went a long way to helping us to heal.

@Purplewithred Today I’ve run out of steam and feel too tired to do much more. Maybe I will if I can gather some energy in the future. Thank you for the link

@Mischance that all sounds absolutely appealing. Your frustration must be immense

@Fairyflaps I’m glad you’ve found some way forward for healing. I’m going to start working on mine.

My poor nan never got a syringe driver as the hospice said she wasn't at that stage. She was in her nursing home who made increasingly desperate calls to them in the last 18 hours of her life. Luckily an amazing gp came out every time we called the out of hours gp and he gave her injections of strong painkillers but we were very stressed at the timing of calling the gp.Her death was everything you wouldn't want.
They rang ten days after she died to get to know us all and I'm afraid my reply wasn't polite.they then continued to send leaflets about their lottery one off donations and leaving a legacy in your will. I despise the place.