Module 4: Supporting families and friends

4.3. Positive experiences

Nobody who talked to us after their relative died had regrets about life-sustaining treatment having been discontinued. They were desperately sad that it had become the ‘least worse’ option, and some definitely regretted that they had been put into the position of  ‘lobbying’ for this outcome (when clinicians had failed to take the lead on assessing best interests). But none regretted the outcome itself.

The dying process was usually less difficult than they had feared. We have heard family members describe some such deaths as ‘brutal’ and traumatic to witness, but most families reported that the death seemed generally ‘calm’ and ‘peaceful’ for the patient. Indeed, some reported that once an end-of-life care plan had been agreed, everything became ‘gentler’ and even ‘more dignified’.

Questions for you
  • What positive things do you think family members might say about the move to an end-of-life care focus for their relatives? Make a note of these.
  • Then click on the boxes below to hear or read about what some family members said.
Show Helen's comment

“His nursing, as he went towards his death, was far calmer, and his life was far calmer and far more peaceful and far more dignified than when he was being actively nursed.” [Mother of teenager injured in a road traffic incident]

Show David's comment

“[When all active treatment stopped] it was quiet, and when I went to give her a hug and tell her it was all right, it was perfect. It was peace. It was definite peace, you know.” [Son of woman who had a brain haemorrhage in her 50s]

Show Kevin's comment

“I think the love was what we did. To terminate feeding Matthew, I think there was more love in that than letting him carry on in the state he was, you know, forever more.” [Father of teenager pedestrian hit by a car]

Sometimes family members emphasised that discontinuation of clinically assisted nutrition and hydration, although originally very disturbing, came to be seen by them as a relatively ‘good’ death given the options.

Listen to Clare describe her husband’s death following discontinuation of clinically assisted nutrition and hydration

Listen to Clare talk about her feelings about her husband’s death

Click to see text version

Clare: I was glad ultimately that he didn’t die of a chest infection, you know, that he didn’t die of a cardiac arrest or something, because I know that it was calm and peaceful when he died. And after everything that had happened that’s something that I think was the very least that he deserved. And his death wasn’t traumatic it really wasn’t a traumatic death for us or for him.

Jenny: And that’s so interesting because so many families I work with will say, ‘if he dies of an untreated infection I can cope, if he dies a cardiac arrest I can cope, but the one thing I cannot cope with is removing a feeding tube’.

Clare: I would have said the same, I absolutely would have said the same, I’m sure I would have done, but I couldn’t think… I’ve flipped one eighty  [180 degrees] on that now, I would say that it’s a calm, peaceful, managed process, that actually feels quite natural. I think that’s a bit counterintuitive, but it does feel quite natural….I was worried that it was, you know, just the wasting would be awful but the staff were so kind and sensitivity around the way that they prepared him when we saw him last, and my image of him dying is a calm peaceful death, not people jumping up and down on his chest or deciding whether they should or not or him fighting for breath or…: Everyone knew what to do, everyone knew why he was there and…but I can completely understand why people would feel differently; but my experience is that, you know, it’s a…. it’s a very dignified and peaceful way of letting someone go, you know, and the experience I had of him letting me go, I don’t think I would have had in another situation …When she  [the neuro-rehabilitation consultant] first talked me through that [the possibility of discontinuing CANH] I thought, ‘Ooh,’ [recoiling] because there was just something very, you know, affronting about removing someone’s food and fluid. But it just let him drift away gently. It really did. So the anniversary of his death, for that reason now, I don’t need to focus on his death if that makes sense; I can use it as a date, we can use it as a date, to remember him. We will always mark his birthday and we will always mark the anniversary of his death, but both of those things will be focusing on the joy and not the trauma.

Think about the words used by these family members – did they reflect the sort of ideas and feelings that you had anticipated? Reflect on the context of their experience of the death of their family member, and what they had been through over the years leading up to this. You can learn more about Helen, David, and Kevin, and see short film clips about their different experiences on the Healthtalk.org Resource.

A strong sense that the right thing was being done (or at least the ‘least worst’ option was being taken) was a comfort. And the knowledge that there was good palliative care and respect for the patient was an integral part of how they reported the experience. Listen to Naomi describe her mother’s move to a hospice, and her death after years in a minimally conscious state associated with a degenerative condition.

Show text version

JK: “How was her death? How was her care?”  

Naomi: “She moved into a hospice which was a stark contrast to where she was before because the experience I was getting again from the nursing home […] before she moved to the hospice, was very driven by their morals, by their beliefs, rather than my mum. So moving into a hospice was a tremendous experience because of the behaviours and values of people that work in those environments that are so unconditionally supportive. That’s a mind blowing experience because it’s that environment that you’re in, but it’s very safe, and it’s very gentle, and it was peaceful, it was very peaceful. It was hard to see because it was just another evolution of my mum and sort of knowing that these few more days and that was sort of that. That was difficult, but I knew that the responsiveness of the people who worked there was just constantly, constantly supporting and providing that kind of level of care that there was nothing for me to worry about because you’ve constantly got that reassurance that this is to be expected and this is what might happen then. And you know and it was the right thing. I mean it was hard for me to see it, it was hard because I knew it was a final stage, but I knew it was the right thing, and you had to do the right thing. And I knew that actually had the feeding tube never gone in this is what would have happened, because she would have said ‘I don’t want the feeding tube’, if she’d have been able to say it, ‘I don’t want the feeding tube’, so if she couldn’t take food orally she would have refused it. That is what would have happened, so I’m only letting happen, what this medical intervention wasn’t letting happen, because she was so poorly. So in that way that was kind of the reassurance and the respect of those surroundings and the no judgement and just that it created a very safe environment for it to happen. And I would not let anyone be phased or concerned about that in anyway.” 

Observations from families we interviewed are supported by the experience of clinicians. Lynne Turner-Stokes and her colleagues published an invaluable review of ‘experience and lessons’ from the last eight years of decision-making about life-sustaining treatment for PDoC patients in their care. They note that:

“However sensitively managed, BI discussions regarding elective CANH withdrawal can be very difficult for families, and they require support in their own right. Nevertheless, the feedback from families has been very positive with many expressions of gratitude to the team for supporting a dignified and peaceful death…our experience has been that dying in this situation has often been more peaceful than dying a respiratory death.”  (Turner-Stokes et al, 2022)

You might notice that we have always written about death ‘following’ the discontinuation of CANH, rather than ’caused by’ the discontinuation of CANH. This may not make sense to some people, but it is an important detail. In English law the ’cause’ of death is whatever caused the original brain injury (eg the stabbing, near drowning, cardiac arrest etc).  In this sense, discontinuing a life sustaining treatment does not cause death, it stops prolonging life (or, what some people see as ‘prolonging the dying process’). In intensive care, for example, one in three deaths follow the withdrawal of life sustaining treatment – but we do not talk about the person having died because ‘their ventilator was switched off’ – the death is attributed to the heart attack, car crash, or whatever led to their injury in the first place. Similarly, deaths certificates for PDoC patients (in the UK) list the cause of death as whatever caused the original brain injury. This legal point does not, of course, stop people’s more nuanced and complex feelings about the decision, but does bring a different perspective that some people find useful.