Death without pain
October 17, 2011 11:29 AM Subscribe
I don't want my sister, hospitalised in the U.K. to die in pain. She will die soon of anal cancer and surgical complications including an extremely painful fistula. I would like to know if she has legal rights to be kept pain free, even if that leads to death. I know doctors can make that choice. I would like to know if she can also make the choice. I do not live in England, and cannot stay with her until she dies, others of the family will be with her.
No one will make any unnecessary fuss with the hospital staff - we know that, within their own system, they will do their best. We also know that some patients do suffer unnecessarily so we want to know the limits of her legal rights so that they can be enforced if necessary in as pleasant and cooperative way as possible. We have no desire to persuade her to take more pain killers than she wishes to take. Clearly she can choose greater awareness with pain, or less awareness and less pain, she can chose to follow the doctor's advice or to question it. We will not try to influence her in any way, we only want to ensure that as far as possible her wishes are respected and acted upon.
No one will make any unnecessary fuss with the hospital staff - we know that, within their own system, they will do their best. We also know that some patients do suffer unnecessarily so we want to know the limits of her legal rights so that they can be enforced if necessary in as pleasant and cooperative way as possible. We have no desire to persuade her to take more pain killers than she wishes to take. Clearly she can choose greater awareness with pain, or less awareness and less pain, she can chose to follow the doctor's advice or to question it. We will not try to influence her in any way, we only want to ensure that as far as possible her wishes are respected and acted upon.
This site is about palliative care within the UK, and might be of use in terms of contacts and other resources, both for you and for her.
posted by Blazecock Pileon at 11:42 AM on October 17, 2011 [1 favorite]
posted by Blazecock Pileon at 11:42 AM on October 17, 2011 [1 favorite]
I'm sorry for the pain you & yours are suffering. If it's any comfort, UK healthcare mostly has a much better attitude to end of life care & pain relief than I'm told the US does, particularly from the point of view of administering pain relieving drugs in meaningful quantities.
Have you read the articles on NHS Direct on end-of-life care, particularly on palliative care & hospices?
posted by pharm at 11:44 AM on October 17, 2011 [2 favorites]
Have you read the articles on NHS Direct on end-of-life care, particularly on palliative care & hospices?
posted by pharm at 11:44 AM on October 17, 2011 [2 favorites]
And here's Cancer Research's page on pain treatment. It's not framed in legal terms, but it states that the patient has a central role in shaping their palliative care.
This is something you could call Cancer Research's helpline (number on home page) or NHS Direct for advice about.
posted by Abiezer at 11:48 AM on October 17, 2011
This is something you could call Cancer Research's helpline (number on home page) or NHS Direct for advice about.
posted by Abiezer at 11:48 AM on October 17, 2011
If she's lucky she will have a Macmillan nurse involved in her care. They are specialists in palliative care for cancer and they are usually superb at advocating for the person with cancer.
In experience with my own family, the person with cancer was involved in choosing to what extent they wanted to be pain free (and therefore not able to recognise or interact with the family) and to what extent he wanted to cope with pain and stay more alert.
posted by kadia_a at 11:59 AM on October 17, 2011 [1 favorite]
In experience with my own family, the person with cancer was involved in choosing to what extent they wanted to be pain free (and therefore not able to recognise or interact with the family) and to what extent he wanted to cope with pain and stay more alert.
posted by kadia_a at 11:59 AM on October 17, 2011 [1 favorite]
Best answer: You might also want to read up on the Liverpool Care Pathway for dying patients which I believe most UK hospitals are signed up to.
Also, this article is supposed to be the advice given to GPs in the UK on end-of-life palliative care which contains the particular quote:
As an example, here is Bolton NHS trust's guidance on end-of-life pain relief which is pretty clear that there's no real ceiling on the amount of morphine (or other strong opiate) which can be administered if required. That document looks to be very similar to this:"Prescribing in Palliative and Terminal Care" on patient.co.uk, which contains this apposite quote:
posted by pharm at 12:43 PM on October 17, 2011 [2 favorites]
Also, this article is supposed to be the advice given to GPs in the UK on end-of-life palliative care which contains the particular quote:
...drugs should be prescribed on a prophylactic basis with no other consideration than maintaining quality of life.No UK medical professional will admit to administering morphine specifically to end someone's life, since to do so would be illegal. However, my lay understanding is that they are permitted to administer as much is required for effective pain relief in end-of-life cases & if that ends up bringing forward that end then so be it.
As an example, here is Bolton NHS trust's guidance on end-of-life pain relief which is pretty clear that there's no real ceiling on the amount of morphine (or other strong opiate) which can be administered if required. That document looks to be very similar to this:"Prescribing in Palliative and Terminal Care" on patient.co.uk, which contains this apposite quote:
Palliative sedation and the doctrine of double effectGiven the inevitable variability in care in an organisation as large as the NHS, it may help if your sister has someone there who can be her advocate: as kadia says a Macmillan nurse could be great help. Equally, an informed & assertive family member can make a big difference. Do encourage your family to investigate appropriate hospice care for your sister: they're very experienced in end-of-life palliative care & may be a better place to die than the hospital itself.
Terminal prescribing is often full of ethical anxiety for the prescriber, particularly in situations where a terminally ill person faces refractory symptoms. Palliative sedation is the poorly defined practice of continuous deep sedation used in patients with terminal illness where normal medical treatment is failing to relieve severe symptoms of pain or agitation, and the ultimate option is to sedate beyond perception of these symptoms.
Doctors are duty-bound to relieve suffering but not to cause the patient's death. The use of medication to end someone's life purposively constitutes euthanasia and is currently illegal in the UK. However, the doctrine of double effect is widely accepted and refers to the use of higher doses of opioids and sedatives to relieve terminal suffering without the intention of causing the patient's death, even though the risk of hastening death is foreseen. In reality, evidence suggests that palliative sedation in the last hours of life is not associated with shortened survival overall so that the doctrine of double effect need not routinely be invoked to excuse this aspect of terminal care.
posted by pharm at 12:43 PM on October 17, 2011 [2 favorites]
Response by poster: Thankyou everybody, and especially thanks to Pharm. I am extremely grateful, your reply has been so informative and helpful. The information, especially in 'prescribing in palliative and terminal care' will be of great value to my sister and to our family.
posted by nickji at 1:33 PM on October 17, 2011 [1 favorite]
posted by nickji at 1:33 PM on October 17, 2011 [1 favorite]
You need, urgently, to be in touch with MacMillian Cancer. These are the go-to people for palliative and hospice care but more than that, they will talk to you, with extremely educated cancer specialist nurses on the phone. They are an amazing source of care and support. Amazing.
posted by DarlingBri at 3:06 PM on October 17, 2011 [3 favorites]
posted by DarlingBri at 3:06 PM on October 17, 2011 [3 favorites]
I'm so sorry to hear about your sister. My mother-in-law died 2 years ago from colorectal cancer, so I have some experience of a similar situation. I also work in a hospital, so I have some knowledge of the workings of the NHS. In my experience, the default position of the vast majority of doctors and nurses caring for your sister will be to make sure she's not in pain, unless it goes against her wishes.
However, I would also agree with Pharm that a hospice might be a better environment for her and for the rest of the family if it's an option. Hospital wards can be very busy and staff are often overstretched. While I don't think ward staff would intentionally leave her to suffer, I know from experience with my mother-in-law that things can change quickly and what is adequate pain relief one day, may not be enough the next day, or even later that day. If she is on a busy ward, I'd recommend keeping family members with her as much as possible so that if she does deteriorate, they can flag it up with the ward staff quickly.
posted by *becca* at 4:42 PM on October 17, 2011 [1 favorite]
However, I would also agree with Pharm that a hospice might be a better environment for her and for the rest of the family if it's an option. Hospital wards can be very busy and staff are often overstretched. While I don't think ward staff would intentionally leave her to suffer, I know from experience with my mother-in-law that things can change quickly and what is adequate pain relief one day, may not be enough the next day, or even later that day. If she is on a busy ward, I'd recommend keeping family members with her as much as possible so that if she does deteriorate, they can flag it up with the ward staff quickly.
posted by *becca* at 4:42 PM on October 17, 2011 [1 favorite]
Yes, speak to MacMillian.
In my experience the patient would be transferred to a hospice rather than a hospital - my dad was, although the cancer was different - most areas in the UK have a local hospice purely so that these kinds of decisions and options are more easily exercised. These are usually run by charities and the NHS together, but you won't need to pay for care. They're also very supportive for the family as well as to the patient.
I can't specifically tell you whether the concerns you have will be met, but in my dad's experience the care he recieved was very much focused on making his passage easier and lessening any pain that was there. I think as becca has said it would be more unusual not to lessen the pain.
posted by mippy at 8:01 AM on October 18, 2011
In my experience the patient would be transferred to a hospice rather than a hospital - my dad was, although the cancer was different - most areas in the UK have a local hospice purely so that these kinds of decisions and options are more easily exercised. These are usually run by charities and the NHS together, but you won't need to pay for care. They're also very supportive for the family as well as to the patient.
I can't specifically tell you whether the concerns you have will be met, but in my dad's experience the care he recieved was very much focused on making his passage easier and lessening any pain that was there. I think as becca has said it would be more unusual not to lessen the pain.
posted by mippy at 8:01 AM on October 18, 2011
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posted by nickji at 11:36 AM on October 17, 2011 [1 favorite]