Dr Kirsty Boyd, a consultant in palliative medicine from Edinburgh, talks about her experiences of speaking with patients and families about future care planning and what she has learned from her research and teaching about communication.
I work in a large teaching hospital so for our patients multi-morbidity is the norm. People are admitted with complications of one or more of those illnesses; a problem related to advancing age or frailty – infection, a fracture, delirium and so on; or with an unconnected acute illness like myocardial infarction or ischaemic colitis.
How people and their families understand this episode of deterioration, its implications and what to expect is about as diverse as their diagnoses. Most, but not all, have given little real thought to what might happen or the need to be making decisions with professionals about the best course of action.
A few people hold very strong views about prolongation of life and pursuing every available option. Others want reassurance that only interventions that are likely to work and are not burdensome will be given. The majority of people we see are trying to live as well as possible on a day-to-day basis with the inherent uncertainties of multi-factorial, declining health. They are usually hoping for the best, coping by maintaining as much independence as they can manage, and choosing not to plan for ‘dying’.
The majority of people we see are usually hoping for the best, coping by maintaining as much independence as they can manage, and choosing not to plan for ‘dying’.
If people are likely to be in the last days of life in hospital or at home, we find that conversations about planning good care can still be hard but they do follow a pattern that is better understood by doctors, other health professionals, our patients and their families. I begin by finding out what people know and then share information about the situation linked to what they are expecting. We want to support people who are coming to terms with bad news, talk about what matters to this person who is dying and their family, and then we plan care together.
Discussions about interventions are framed by recognition that the person is dying. Treatments like CPR do not work in these circumstances. I sometimes say that the heart and breathing will stop and we are not able to start them again. We may need to talk about why clinically assisted hydration and intravenous antibiotics are harmful when they cause the person to have too much fluid in their body. We can then say how we will make sure the person is offered comfort oral feeding and has good mouth care.
If we can start talking with people about planning future care when things are more stable that’s better, but we need to make a connection to a recent event in their lives to give our conversations personal meaning and context.
When a person is deteriorating against a background of declining health or advanced age and frailty but the progression of their condition is uncertain, conversations are much more challenging. We might wish we had a ‘prognostic’ tool that would enable us to predict exactly when the time is ‘right’ to start planning ahead because a person is now ‘sick enough’ or is clearly reaching the ‘end-of-life’. As the recent BMA review found, no such tool exists.
I suggest we use trigger events as a good starting point – an unplanned hospital admission, or a diagnosis of progressive illness, moving into a care home, the need for more help with personal care at home or a change in the health or situation of a carer on whom the person relies. If we can start talking with people and their families about planning future care when things are more stable that’s better, but we need to make a connection to a recent event in their lives to give our conversations personal meaning and context.
Having shared information about the situation based on their current understanding and expectations, I have a better grasp of how ready they are for thinking ahead.
I now approach these discussions using some established ways of talking about an uncertain future that help people to engage with considering what might happen without confronting them with a reality that they are not ready to face or one that might not actually pan out as expected. Having shared information about the situation based on their current understanding and expectations, I have a better grasp of how ready they are for thinking ahead and often say things like:
- “If you were to get more unwell, what would it be important for us to know about?”
- “I hope this treatment will help, but I am worried that you might not be strong enough for an operation.”
- “Sometimes people want to talk about whether or not to go back to hospital if…”
In Scotland, we call this anticipatory care planning because we recognise that it is important to make plans when we have a reasonable idea of what could happen. The plans we discuss will relate to each person’s current situation and allow us to address what is important for them as individuals in practical ways. Framing these discussions as ‘just in case planning’, as I have described, often helps people to cope with uncertainty.
Advance care planning, offered when people are still well or have recently been diagnosed with a life-limiting condition, seeks to respect personal autonomy and tackle our pressing need to avoid burdensome interventions with poor outcomes when people are unlikely to recover and may well die. Having an advance care plan that details specific treatments a person would not want sometimes helps professionals to make a subsequent ‘best interests’ decision.
I believe that advance care planning has the potential to be distressing if it means people are asked to think about how or where they might die before they are ready.
However, I believe that advance care planning about health matters has the potential to be unhelpful and distressing if it means people are asked to consider decisions and preferences for uncertain future circumstances or think about how or where they might die before they are ready.
Patients have different expectations about how they and their family can make decisions with their healthcare team. My view is that the main value of advance care planning is in preparing people for future shared decision-making. By that I mean being ready for ongoing conversations with professionals about what is happening with their health, what is important to them, and then what options are available that are consistent with those values and priorities.
As the Age UK project shows, people tend to think about their future in broad terms while professionals are trying to encourage the completion of documented plans – often written using inaccessible, ‘legal’ language. Some people lose all decision-making capacity but many can continue to participate to some extent and must be supported and enabled to do that.
Let’s embrace a wider and more person-centred approach to planning ahead that accepts the uncertainties of future care.
Let’s embrace a wider and more person-centred approach to planning ahead that accepts the uncertainties of future care. Encourage more people to think about choosing someone they trust to help them make decisions if they reach a point where they are not fully able to do so themselves. Involve patients and those close to them in discussions about what sort of decisions about treatment and care they might face in future. Write the legal documents in the kind of language used in many of the excellent patient information resources we have already and reduce the costs of doing them.
Advance care planning is a starting point. We build on those discussions when we come to anticipatory care planning and then plan good care in the last days of life when the time comes.
Dr Kirsty Boyd MBChB, FRCP, PhD is a Consultant in palliative medicine in NHS Lothian and honorary clinical senior lecturer at The University of Edinburgh working with the Primary Palliative Care Research Group. She developed the international Supportive and Palliative Care Tool programme and is lead tutor for the Effective Communication for Healthcare education programme.
Dr Katie Smith offers some advice for medical students and doctors in training looking to improve their confidence in end of life care
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