Client Training Module - Non-dementia health decisions

From a study in the British Medical Journal, Making decisions for people with dementia who lack capacity, 2010; http://www.bmj.com/content/341/bmj.c4184  

Non-dementia health decisions

End of life care and resuscitation

Discussions about end of life care were often influenced by experiences with other people they had known with dementia or other illnesses:

  • “My mum was talking about when she was going to die before she even got unwell. . . I wasn’t to have her resuscitated.” (daughter)
     
  • “My brother-in-law fell . . . and they said to his wife ‘do you want us to resuscitate him?’ and she said ‘I can’t tell you to let him die!’ So they kept him going . . . he came to at one stage . . . and he shook his head like that and my sister-in-law said ‘I’m so sorry, I should have said to them don’t resuscitate him’ and I thought, ‘I’m not going to let my husband suffer in that way’.” (wife)

Some talked about the helpfulness of consulting other family members, or the difficulties when they did not agree:

  • “Resuscitation was the biggest decision. . . I consulted with my children and my wife’s sisters and they were all in agreement . . . she has gone through enough.” (husband of young onset patient)
     
  • “My brother and sister . . . wanted the drip, antibiotics and the oxygen reinstated . . . and the doctor said ‘it will flood her heart’ and she died a horrific death . . . but my brother always said, ‘oh where there’s hope’ . . . There was no hope.” (daughter)

Quality of life was important to the decision:

  • “I would not like my sister to be resuscitated . . . she has got no quality of life . . . so why put her in the same predicament and for us to be in sorrow . . . longer?” (sister)
     
  • “Mum’s body . . . just didn’t function. . . The doctor said, ‘would you like us to resuscitate,’ we thought another couple of days of suffering like this, why?” (son)

At the end of life, the decision about whether instituting artificial nutrition would keep the person most comfortable was very difficult and complex:

  • “When it got very close to the end of [his] life, they did ask me whether I wanted him to be fed through his stomach . . . the doctor . . . gave me the facts and didn’t try to influence me . . . but it seemed . . . that . . . to prolong his life would be cruelty.” (wife)
     
  • “In the last few weeks she virtually stopped eating . . . they . . . spoon fed her . . . it was all done in a very calm, serene way. I’d be against it if it was forced.” (son)
     
  • “When he finally was coming home, we still had to feed him artificially through the abdomen, and . . . he was never quite the same man again.” (widow)

Only one participant had made a written advanced decision (of doubtful legality, as it asked for life to be shortened):

  • “Both of us have written living wills . . . there are certain circumstances under which we prefer . . . actually to have our life shortened . . . we did give the draft . . . to our GP . . . he told us that we had to reformulate it because . . . it has got a different name . . . advanced decisions.” (wife)

Taking part in research

Carers considered the person with dementia’s previous wishes when deciding about participation in research. They also considered potential benefits to the person with dementia and to others or thought that they derived personal benefit:

  • “I know he would volunteer partly because . . . he did [participate in research].” (wife)
     
  • “When we talked about donating organs before [he] got ill, he’d always said he didn’t want it . . . so it was quite simple.” (wife of young onset patient)
     
  • “If they ever came out with a drug I don’t mind . . . making that decision for my sister to be given a chance.” (sister)
     
  • “I really wanted to be part of the research, because my own experience . . . was horrible, anything that can be done to stop other people having that same experience . . . has to be worthwhile.” (daughter)
     
  • “. . . having the assessment through the research was very useful . . . one learns a little also because . . . you don’t realise sometimes how you are feeling.” (widow)

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