Shared decision making
Decisions involving values and difficult personal choices
People’s values are always likely to have some effect, however small, on any decisions made. However, there are certain decisions, which people commonly find difficult to make. Such decisions span a wide range of health issues, but in the interviews we collected, they feature most strongly in decisions such as ending pregnancy; end of life care and decisions made on behalf of others. Health professionals may feel as a matter of principle that these are choices they should leave to the individual; patients may agree they are the best person to make such decisions, but sometimes they want someone to help them.
She describes the day she discussed whether to continue or end the pregnancy as traumatic and...
She describes the day she discussed whether to continue or end the pregnancy as traumatic and...
I missed out, I mean I should have mentioned to you that one of the things we talked about on the Friday, the day of the diagnosis, was, I made myself ask a sort of, you know, “Okay, if I decide to go ahead with the termination, how does it happen? Because I need to know, you know, if I'm going to consider it. I don't think I want to do it but, you know, please tell me how it happens.” And I still can't talk about it now without getting really emotional about it.
When making decisions which involve morals and values there are certain factors which shape the choices made. People often want to be more involved if they, or the person they are deciding for, have a preferred outcome based on values or beliefs, for example religious convictions. Sometimes people instantly know which choice is right for them, but in other cases people’s idea of what they would like to happen may change during the decision making process.
She did not have diagnostic antenatal screening because she knew she would not end the pregnancy,...
She did not have diagnostic antenatal screening because she knew she would not end the pregnancy,...
(English translation, audio clip in Mirpuri).
When she realised that her baby would not have survived long after birth she changed her views on...
When she realised that her baby would not have survived long after birth she changed her views on...
I mean, at first, when we first discovered that, you know, there's a problem with our baby, my instant reaction was 'Well I'll be going to term, because there's no way I could sign a consent form for a termination'. That was my instant reaction, but then as time goes on, and we agreed we'd talk about it every day, that we must sit down and have a conversation about it every day, and you know, agreed that we weren't, you know, we would just talk if we needed to say something.
They were shocked when a nurse asked them, in a roundabout way, to consider turning off their son...
They were shocked when a nurse asked them, in a roundabout way, to consider turning off their son...
Mother' They kept him [son] sedated for about five days and then decided to bring him round again and do another CT scan. He was still fairly agitated, and the CT scan showed multiple infarcts across the entire surface of his brain. Now this was about eight days in to the attack, to a point where I thought in my ignorance that he had survived and therefore he would survive. I thought he was desperately ill, but I thought he was safe. When they had the second CT scan, actually the third, because they took one in the first hospital, but the second one at that ITU, they sent it to the regional centre for an opinion. And the opinion was that he could not survive. But if by chance he did, he would be in a persistent vegetative state.
When the doctor explained that her unborn child had a condition which was incompatible with life...
When the doctor explained that her unborn child had a condition which was incompatible with life...
I think it was just too much to really remember. I was just devastated, but numb I think. I just didn't really know what to say or do. And your whole life falls apart in one sentence from somebody, and it was just awful. But I don't think the full extent of it had hit us by then.
It was difficult to decide on the best course of action because no one could be sure of the...
It was difficult to decide on the best course of action because no one could be sure of the...
We came back, and when you're actually faced with actually having to do it, and actually think about it, it's not as clear-cut as that.
Outside influences often shape how people make their decisions. People may choose to ask friends and family to help advise and support them in making difficult decisions.
While in intensive care, he had trouble making a decision about potentially risky medication for...
While in intensive care, he had trouble making a decision about potentially risky medication for...
So they were just like God no, and he [the consultant] said, "The only thing we could really do now is there's a drug called Xigris, now we hadn't got it in the hospital and we've never used it before, but we can order it in, but you've got to understand that it, it is new and one of the side-effects of it could cause an internal bleed, either in the brain or internally, in which case that's really all there is to it then."
When making the critical decision to allow her husbands leg to be amputated while he was in...
When making the critical decision to allow her husbands leg to be amputated while he was in...
The chest infection unfortunately became really bad, and he was taken to Intensive Care. I think that was about the 10th February and in Intensive Care obviously he was monitored very closely and they kept an eye on the foot, but because he had had such a severe heart attack they were concerned about another operation and the doctors kept me informed as to progress, but the toxins in the gangrene started travelling and I was told that my husband would die if he didn't have the operation or he could die during the operation. They were no guarantees and obviously the choice was mine.
His wife would not let him sign the consent forms for her operation as there was a risk she could...
His wife would not let him sign the consent forms for her operation as there was a risk she could...
Husband' And the wife wouldn't let me sign the consent form, would you? She wouldn't put it on my shoulders. She said, “I'll sign it myself.”
What were the consent forms for?
Husband' To have the operation.
Right, so you didn't sign them?
Husband' Wife wouldn't let me sign it. The wife wouldn't let me sign it. She wanted to sign it in case anything happened. Because he was honest, he was very, he said, “I don't want” he said, “I can't give you a percentage.” He said, “Your wife is very ill.”
Wife' He didn't tell me that, did he?
Husband' No, he told me. He said, “If we don't operate now” he said, “You won't have a wife by the morning.” And they operated. They took her up to Intensive Care. I stayed there. I don't know, I don't know what time, I can't remember much about it to be honest with you
Parents considered the effect that having a sibling with microcephaly would have on their two...
Parents considered the effect that having a sibling with microcephaly would have on their two...
Mother' For me it was when the neurologist said that this baby will have no quality of life, and it will not know that it exists.
When making the decision to end the pregnancy at 17 weeks, they wanted to do what was best for...
When making the decision to end the pregnancy at 17 weeks, they wanted to do what was best for...
Mother' But yeah, once we knew it was the most severe case and once the consultant looked at me and said, “How pregnant are you?” And I told him, and he said, “I can't believe you're still pregnant. Most of these are gone by 11 weeks.” And that's when I kind of concluded that I was trying to miscarry for thirty days and my body just held on. And it was a bit cruel, really, that my body held on but...
It was very important to this woman with terminal cancer to die with dignity before becoming...
It was very important to this woman with terminal cancer to die with dignity before becoming...
I want to take control now. I don't want to be resuscitated. I don't want intervention. If it's going to happen, I want it to happen. I don't want to be in a vegetative situation where my family have to sit round a machine that's breathing for me and thinking for me. I want them to remember the Mum that fought to the end and just went to sleep.
A woman with chronic pain was concerned that she may become addicted to her medication, but...
A woman with chronic pain was concerned that she may become addicted to her medication, but...
There are times when people have to make decisions for another who is unable to decide for themselves, such as a young child, a relative who is unconscious in intensive care, or a family member with dementia. People talked about how it was important to establish what the person themselves would want or value.
She carefully considered the outcome of her son surviving intensive care and made choices guided...
She carefully considered the outcome of her son surviving intensive care and made choices guided...
I would've wanted my son back in any state, after all what he'd done, whatever medically, but I'm then selfish, would my son wanted to come back not being able to speak, not being able to walk, not being able to see? And all this was told to us under the medical team, that this could happen to him. He's been unconscious for ten days and the brain is a complex piece of equipment, and at the time I said, “Anything, just I want him”. But you look at life so differently and that would've been very selfish because I don't think, in just me and our son, that my son would want to have lived that type of life. So you must not be selfish.
The husband and daughter of a woman in intensive care chose to not resuscitate her because they...
The husband and daughter of a woman in intensive care chose to not resuscitate her because they...
Daughter' Basically the other guy [consultant] had told us that she was very ill and probably...
He knew his wife Teresa, who had MND, would not have wanted invasive ventilation to keep her alive.
He knew his wife Teresa, who had MND, would not have wanted invasive ventilation to keep her alive.
Unfortunately by this time we're talking approaching Christmas of 2005 and Teresa's condition had deteriorated quite significantly. She was having difficulties, severe difficulties, with swallowing and the hospital were saying to her that she should be having a PEG tube fitted. She wasn't terribly keen on that idea but was allowing the family to persuade her to have it done because we wanted her round for as long as possible. And she said that she would like to get Christmas over and then, OK, she consented that she would have it done. During Christmas she appeared to develop a chest infection which is obviously the thing that we were all most concerned about, the thing which is most dangerous to people with MND particularly ALS or bulbar onset. Shortly after Christmas she was admitted to hospital as a result of the chest infection but with the use of antibiotics and intensive physiotherapy and oxygen she was able to be discharged.
The GP told her it was no longer safe for her mother to drive. She found it difficult to take...
The GP told her it was no longer safe for her mother to drive. She found it difficult to take...
Now I, certainly one of my sisters felt her driving was risky and I didn't. And I felt it was a bitter blow for her to lose that car but sure enough she did because the doctor wouldn't sign the thing saying she could keep it. So I went and saw the doctor and persuaded him, the local doctor, to sign a form for the police saying that she could drive, you know, etc, but he wouldn't 'cos he said 'You'll never forgive yourself if she's in an accident'.
Her husband's dementia had undermined the equality of their partnership. She reflects on how much...

Her husband's dementia had undermined the equality of their partnership. She reflects on how much...
The big ethical decision is I have had to take over [my partner]'s life and that's not what he wanted. As I've told you before when we got together it was as an equal partnership, both, all of our, both of us had grown up children and families away and we got together as equal partners and he did not want anything else. And now that's, that's a problem, it isn't a problem it is a situation that's arisen because of his dementia that he would absolutely hate and detest. But it's inevitable.
You know you could go on about the driving, the money, those are the two, two of the biggest and the loss of, the complete loss of independence. Not being able to go anywhere on his own.
They were frustrated when their GP did not listen to their concerns about a family member with...

They were frustrated when their GP did not listen to their concerns about a family member with...
I think GPs should be more enlightened than some of them are, I think they should be, as I say, give family's credit for intelligence. I know not everybody wants to know it, not everybody wants to hear it, but if a family is coming to a GP and saying 'We are concerned about our relative, there is inappropriate behaviour, this is what is happening.' I don't see that it breaks any medical ethics for the GP to say 'What are your concerns, explain them to me fully, what do you think is happening' and then put his own informed input in. And if he's asked directly 'Is there any sign of dementia?' I believe if he thinks there is, he should honestly say 'Yes I think there is.' Because people deal better with what they know than what they don't know in the end.
Sometimes people making difficult decisions involving values immediately knew what their ‘right’ choice was.
This couple had no doubts about ending their pregnancy because they felt their baby would have no...
This couple had no doubts about ending their pregnancy because they felt their baby would have no...
Mother' We went back Monday morning to see the specialist, and she said, yes, there was something wrong with the heart, and the head was not the right shape - strawberry-shaped - and she couldn't actually find a stomach on the baby. She couldn't say, she thought probably 80 per cent chance of Edwards'. She couldn't say without a, and our choices were then to have an amniocentesis, or she could arrange for a specialist to see us in [city] for the heart, which we opted for.
A woman with terminal cancer has carefully considered the implications and how she feels about...
A woman with terminal cancer has carefully considered the implications and how she feels about...
When I know I'm not going to be able to cope with life any more, the pain is bad now, I'm on morphine, I get a lot of break through pain. When I get to the pitch where I really can't cope with anything anymore, where my quality of life is totally gone, I will tell my husband I want a really good day out with the kids, which is when he'll know that when I go to bed that night I won't wake up the next morning.
After making the decision to end the pregnancy she did not welcome the extra questioning she...
After making the decision to end the pregnancy she did not welcome the extra questioning she...
And I then had the job as I say of convincing the consultant at the local hospital that I'd made an informed decision about terminating the pregnancy. And I don't know if they do this for everybody but he questioned and questioned and questioned whether I understood the diagnoses, the prognoses.
She felt rushed into the decision to end her pregnancy (due to a foetal abnormality), but took back some control by deciding to allow the baby to be born alive.
She felt rushed into the decision to end her pregnancy (due to a foetal abnormality), but took back some control by deciding to allow the baby to be born alive.
And at this point, when we got the results we also had an appointment to go back to our first hospital to discuss with the obstetrician what we wanted to do. So we went to see him.
Dealing with difficult value-based issues meant that people were in a heightened emotional state and could sometimes feel offended or upset during or after consultations. Feeling confused and unsure of the best course of action is common when coming to terms with a difficult diagnosis. People described how they looked for hope in what the doctor said to them and sought ways to share the decision or seek emotional support from health workers or friends and family.
She consented to giving her mother a tracheotomy when the doctor explained that without one her mother would die. But she still felt devastated about this choosing this risky procedure.
She felt uncomfortable that she had to have sole responsibility for signing the consent form to...
She felt uncomfortable that she had to have sole responsibility for signing the consent form to...
The other thing that I found really difficult - and I still do - is that you have to sign a consent form to have, to end a pregnancy. And I had to sign my baby's consent form, and my husband didn't. And I feel like sometimes it's just me. I know it was a joint decision but I find, I found that quite difficult to handle. And since ending the pregnancy my son's had surgery, and I made sure it was my husband's signature that was on it, because I found with it felt like a tremendous responsibility. It felt like it was all mine, and yet I knew it was my husband's as well. It was a silly thing, but perhaps symbolic that I found quite difficult at the time.
Health professionals may feel that value-based decisions should involve the individual and may therefore offer less directive advice than they might in other circumstances. However, if they offer an opinion, it can be welcomed and appreciated.
They would have liked more direction from health professionals when making difficult decisions...
They would have liked more direction from health professionals when making difficult decisions...
Father' And, and my recollection is when we, when we got the letter it was, it was a sort of terrible shock because we weren't warned. We knew, we knew that obviously the blood test was, was, that it had taken place and, and the samples were being tested.
The consultant told her that in her position she, too, would have opted for a caesarean. This helped to reassure her that she had made the right choice. Played by an actor.
The consultant told her that in her position she, too, would have opted for a caesarean. This helped to reassure her that she had made the right choice. Played by an actor.
But I met with a, a female, a registrar about two months ago and I think she was' she really went over the birth plan with me, which I found most helpful. She was expecting a baby herself so I think she kind of understood.
Right. And can you tell me a little bit more about the discussion that you had with her?
Yeah. She had a good look at the notes and said, 'You know, really, I think if I was in your shoes then I would go for a section, too'. She said just perhaps failure to progress was maybe slightly small or maybe it was a big baby, or, you know, whatever, but just for health reasons, on this occasion she said, 'I really think that, you know, that would be best for you'. So that helped tremendously.
Richard got his GP to refer him to a psychiatrist because he suspected he may have Asperger's...

Richard got his GP to refer him to a psychiatrist because he suspected he may have Asperger's...
Sue' We approached the GP first or I did. And the GP was a bit reluctant about the whole thing.
She took control of how she wanted the birth to go, and thinks this made things easier for the...
She took control of how she wanted the birth to go, and thinks this made things easier for the...
They were very good, I mean they were just so kind. I'm very lucky in that respect because I've heard so many stories that hospitals weren't good, and that midwives and all, you know, the specialists and that, were not compassionate. But mine were, I was very very lucky.
Her husband was annoyed that the option to save eggs was not presented to them before his wife...
Her husband was annoyed that the option to save eggs was not presented to them before his wife...
My husband was very bitter for a long time, very bitter about the fact that we'd had no pre-warning, about the fact we weren't given any counselling pre-hysterectomy, about the fact that there were no eggs kept.
Conclusion
While making decisions involving values medical opinion is not always the most important consideration. The individual has to make a choice that is personal to them and their family, and family members were often used as a source of advice and reassurance. Accommodating values in clinical settings is not always simple as people’s preferences are so diverse. Although health professionals aim to give less direction in such issues, in reality this is dependent on the issues, and sometimes assumptions based on values are made.
Responsibility for making decisions is often both accepted and appreciated but sometimes the weight of responsibility, especially at an emotional time, can be hard to bear. Making decisions for others is difficult because (in cases of dementia) it often means dramatic change in roles within a parent-child relationship, or a previously equal partnership. Those who know the person best are most able to consider which outcome the patient would value themselves (for example in intensive care). Such decisions are tough and people struggle with them but would rarely want to leave them entirely in the hands of clinical staff.
Last reviewed February 2016
Last updated February 2014
Last reviewed February 2014
Last updated February 2014