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Elderly parents

gold standards palliative care framework

21 replies

MereDintofPandiculation · 16/01/2020 16:52

Have just found out from his medical records that my father has been placed on the "gold standards palliative care framework". Should I be worried about this? Does this mean he may be denied treatment? (For my father, length of life is more important than quality of life.)

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HappyHammy · 16/01/2020 16:54

sorry to hear about you dad and hope he is comfortable. What is it you are worried about? Are you able to discuss this with your dad if he is able or the staff.

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Cockw0mble · 16/01/2020 16:57

Google it. The website is very informative

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PointlessAnswer · 16/01/2020 17:01

The aim of palliative care is to neither prolong or shorten life. It is focussed on alleviating symptoms (both physical and emotional). Being on the gold standard simply means that he will be on a list of patients within his GP surgery approaching the end of their lives who the GPs need to be aware of as they are likely to need more support from the GP surgery going forward. The patients are discussed regularly at practice meetings to ensure they are receiving appropriate timely care. I would suggest speaking to his GP to make sure that your fathers wishes for his future care are documented in his medical records.

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NurseP · 16/01/2020 17:08

Pointless answer has it exactly right. Palliative care is about symptom control. He will not be denied any treatment. In the event of illness or accident, decisions are made at that time and based on patient and family wishes and acting in the person s best interest. Speak to the GP if it will help you be clear in your mind. X x

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MereDintofPandiculation · 17/01/2020 08:11

Cockw0mble I have googled it. Most hits are from official sources and are of course very reassuring. That's why I'm asking here.

I already have an appointment booked with the GP. They will no doubt be reassuring.

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MereDintofPandiculation · 17/01/2020 08:13

What I am worried about is that the majority of people come to a stage where they feel the time has come and they don't want any further messing around. My father is a long way from that. I am concerned that "best interest" decisions will not coincide with his wishes. He is no longer able to discuss these things himself with full understanding so I am his advocate.

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WillLokireturn · 17/01/2020 08:42

Best interests decisions include the persons wishes, past and present
So be very present and available as his advocate. Meet or talk with his care team, to clarify those just as you have explained his stated views on here. Ask that they ring you for any big decision so you can support him

I'm so sorry you are going through this

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MereDintofPandiculation · 17/01/2020 08:49

The aim of palliative care is to neither prolong or shorten life. My father would want his life to be prolonged.

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picklemepopcorn · 17/01/2020 09:05

My understanding is that palliative care reflects that life can no longer be prolonged, just symptoms controlled.
We had the opposite concern, that without a DNR (which DM wouldn't countenance) DF would be aggressively treated. That was the policy we were warned of right up until he went into hospice care.

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CherryPavlova · 17/01/2020 09:20

Research suggests early involvement of palliative medicine team actually prolongs life.
If you have Lasting Power of Attorney (the only legal or applicable advocacy) then decisions above the limits of care should be made with you. If you don’t the medical team should still discuss it with you if your father lacks capacity- although the decisions are the clinicians.

Usually it’s about deciding which level of care would be futile and not forcing that onto someone. Putting an elderly person with dementia on a ventilator is probably unkind but each situation would have individual consideration. Resuscitation very rarely works in young fit people and is generally futile in the elderly. Sedating someone to insert a feeding tube and then making them wear boxing glove type restraints is undignified and unkind unless in the very short term when a full recovery might be expected. All individual decisions.

If he falls and fractures his femur, he will still be operated on. If he gets a symptomatic urinary tract infection he’ll still get antibiotics.

The framework is about improving people’s lives as they approach their journeys end. It’s not about rationing care or shortening life.

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CherryPavlova · 17/01/2020 09:24

As an aside, you don’t and can’t consent to a DNACPR decision. You cannot consent to treatment not being offered, which it is.
It is only about cardiopulmonary resuscitation and other treatment. It is always a clinical decision but the patient and/or family (If patient consents or lacks capacity) should be involved in the discussion.

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AutumnRose1 · 17/01/2020 16:27

Mere

So for example, to prolong his life, your father would want blood transfusions, tube feeding, CPR?

I would let the GP know, in writing. And the nursing home.

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AnnaMagnani · 18/01/2020 14:29

If your father is on the Gold Standards Framework it suggests that he has some form of serious illness with limited treatments available.

The GP would really like to hear what you have to say as your DF's advocate eg that he would like treatment, if he was poorly and needed to go into hospital he would want to be admitted. At some point in the future you and he might change your minds on this, if he became more unwell and that is why the GPs have regular meetings to make sure their information is up to date and everyone involved in your DF's care is making sure his needs are met.

However what the GP may feed back to you is that there may be limits on what medical treatment can realistically achieve for your DF. For example your DF might want to be resuscitated if his heart were to stop beating, but the GP may know that medically speaking the chances of success due to your DF's state of health the chances of success are very very poor or even zero.

Or perhaps just that he is on the maximum amount of medication for his condition now and it can't be adjusted any more if he gets more unwell - it'sgood for everyone to know this unstead of expecting there to be more treatment available in the future.

As yoour DF's advocate it's good to have these sort of conversations out in the open, rather than them coming as a complete surprise in a crisis. It enables you and the rest of DF's family (if he isn't able to make these sorts of decisions himself) to know what sort of things you can expect in the future.

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MereDintofPandiculation · 18/01/2020 16:56

it suggests that he has some form of serious illness with limited treatments available. Well, no. Just age and frailty, along with atrial fibrillation that he's had for over 30 years. Not even a dementia diagnosis. From something the nurse practitioner said, I think he's on the register because of "the surprise question" - "would you be surprised if this patient died in the next 12 months". Well, I wouldn't, but I think he's got his mind set on 100, and I don't expect him to die in the next 12 months.

I have been through his wishes with the care home manager and the nurse practitioner (who visits the home once a week), but I'm not sure exactly what has been documented. I think I maybe better write everything down, with a copy to the surgery, and a copy to the care home. I'll wait till after my meeting with the GP on Tuesday.

the GPs have regular meetings to make sure their information is up to date and everyone involved in your DF's care is making sure his needs are met. Do I or DF get any input into this, or is it a matter of making sure I fight to get our voices heard?

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AnnaMagnani · 18/01/2020 17:11

Age and frailty do limit what is available unfortunately - a frail person doesn't respond in the same way as a fit 30 yr old. Medically speaking there are treatments you would put a 30 year old through without batting an eyelid but you would be thinking very seriously about doing the same for an elderly carehome resident - you would be concerned you were doing more harm than good.

The most important thing is that it is good to talk and you need to know why they think he is so frail and have concerns about him.

If you wouldn't personally be surprised if he died within the next 12 months, but also don't expect him to, then he is likely in the lowest level of the GSF (blue or green) which honestly involves not a lot of input.

There is evidence that patients who receive palliative care live longer, largely because people are planning ahead and thinking about their needs instead of just being reactive and responding to emergencies so if his care home is a GSF care home it is actually a sign of it being a higher quality care home.

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Orangeblossom78 · 25/01/2020 14:10

Would the OP be able to do an Advance decision with their dad saying e.g. he does want tube feeding or other treatments? You can get them online etc.

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Orangeblossom78 · 25/01/2020 14:11

I mean it have more control in terms of advance planning / decisions

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NewspaperTaxis · 27/01/2020 16:44

Hi @MereDintofPandiculation, you are right to be alarmed.

In my experience, 'palliative care', gold standard or not, means that they are looking to kill your relative who probably has about three weeks. They generally do this due to dehydration - which the family will not be tipped off about. Often, to be fair, they don't actually run it past you or even mention the word 'palliative' as that does tend to be a giveaway. They take the view that it's better to ask forgiveness than ask permission, as permission can be denied, and as for forgiveness, well, they're unaccountable anyway.

Of course, someone in the final stages of terminal cancer and in pain, well, in that instance palliative care is okay. Such a person is going to die anyway, and it's weighing up quality of life against duration.

You don't say what your father's condition is, however. If he has some long-term neurological incurable condition like Parkinson's, you better watch out. As that's technically 'incurable' it means he can be on a NICE end-of-life care checklist, even if they can live with it okay.

I don't care what the 'official sources' say on this. They are completely and utterly bent and are supposed to be - that includes the regulators the Care Quality Commission and the Nurse & Midwifery Council. It is a complete racket. Don't believe me? Ask me and I'll tell you - or simply Google 'CQC' and 'NMC' and 'scandal' and fill your boots. Alder Hey, Gosport, Whorlton Hall are the famous ones but it's a daily thing now.

In seven care homes over six years my late mother was at, the only residents on 'palliative care' had only days to live, and it always, always signalled the end. Never, ever did I see or hear of anyone on 'long-term palliative care' of the kind described by other posters on this thread, where it takes place over months. It is quite simply a contradiction in terms.

There are all sorts of ways to alleviate pain without invoking the word 'palliative'. Surrey Social Services and their dodgy care homes did fuck all for my mother on this, we had to do it all.

It is the hostile environment. If you cost the State money and contribute nothing, you are on their hitlist. Pensions, prescriptions, it's free to us but it all mounts up for them.

Put it in writing via email what you expect for your father - and can he communicate his wishes himself? And if you don't have LPA in Health and Welfare, well, sorry it's not your decision frankly, not if he no longer has mental capacity. That said, legally they have to run it past you but of course many don't.
Make it clear he is not to be DNR but then again, specify in what circs. If he has a massive stroke or heart attack it may not be right to put him through a punishing resuscitation just so he can linger on in pain. The State is very perverse about all that.
That said, never be confrontational. An email works better than your verbally requesting stuff and getting annoyed - that works a treat because they can do you for 'abuse' and 'intimidation'. They know all the tricks. If you said it verbally, it never happened. They take the view that whatever is put in writing is true, and if it's not put in writing, it never happened. Guile is your friend, anger is not.

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PermanentTemporary · 28/01/2020 23:46

In what circumstances could a DNR on a frail person in their 90s be a bad idea? A DNR is about the heart stopping and not having a large junior doctor jumping on your chest or shocks from a defibrillator for a statistically futile messy prolongation of death - 'best' outcome you linger on unconscious or with a major brain injury. It has nothing to do with stroke in itself.

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NewspaperTaxis · 29/01/2020 15:32

Well, you define what is meant by 'frail'.

My 79 year old mother with advanced Parkinson's was frail when she was admitted to Epsom General Hospital from one of Surrey's deathtrap care homes. She was frail due to the care home's neglect. It had been failed by the CQC the month earlier but neither the CQC nor Surrey's Social Services thought to inform us of this. Nor anyone else due to the way residents were dropping like flies.
Her BP went down to 40/20. You read that correctly.
I got called out to approve the DNR thing. I agreed, but also argued her case. The GP was a good bloke.
She pulled through and lived another three and a half years.
Had DNR been approved, I doubt I'd have gotten that phone call. She would have died in the night.
BTW nobody - none of the Safeguarding heads nor social workers from the corrupt Surrey Council has been held to account over this. Lovely, aren't they?

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RuthW · 29/01/2020 17:05

It's a very good thing to be on where I work. He will get all the care he needs and all staff will be aware of his needs and get priority treatment.

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