What matters most to me when I am feeling stressed or under pressure, is the ability to escape into the countryside to exercise. Gyms and treadmills do not work – it must be the open air, seeing, enjoying and experiencing nature. I am fortunate to have hills to climb, trails to run and great cycle routes close to my home.
I often ask people this same question when they consult with me at our GP surgery. Understanding ‘What Matters Most’ to someone really helps when it comes to discussing health issues and planning future care.
Anticipatory Care Planning is based around these types of conversations. It is a thinking ahead philosophy which helps us to plan care that is right for that person. Whilst it might not be possible to predict every possible future scenario, knowing what would and what would not be acceptable for someone, in the context of their health, makes it more likely that individuals will receive the correct care at the time it is required. This personalised care is a fundamental part of ‘Realistic Medicine’.
Take my patients John and Jean, who have been married for 55 years. John lives with a significant long term incurable breathing problem, and Jean has advanced dementia. The most important thing for John was that he could be well enough to care for Jean. Jean, on the other hand, has consistently said that she did not want to be a burden. Prior to the progression of her dementia, she also told me that she would prefer to be cared for at home rather than in hospital, even if she was so unwell that she might die. Following discussion and agreement with John, we therefore put in place an anticipatory care plan which focused on keeping Jean comfortable, making it clear that she should not be resuscitated if her heart was to stop.
John monitors his own breathing pattern and oxygen levels, and he knows that when certain parameters are met he will require additional treatment. In the past his health has deteriorated rapidly when he has not started this treatment promptly, and the consequence has been intensive hospital-level care. His anticipatory care plan lists the medicines and interventions that we know can help his breathing, and which can enable him to stay at home. He has some antibiotic and steroid medication to take ‘if required’, and his anticipatory care plan contains details of who to call if he is too unwell to look after Jean.
Anticipatory Care Planning conversations are not one-off events, and are best developed over a period of time. There are 4 key steps in the care planning process, which are (i) Preparation and Planning (ii) Meaningful Conversations (iii) Documentation and Sharing, and (iv) Regular Review
There is a helpful toolkit from Healthcare Improvement Scotland which provides more details on each of these 4 steps.
The 4th step, ‘Regular Review’ is extremely important because people’s preferences and priorities may change with time. This has happened with John. Jean had a very peaceful and dignified death in her own home last year. John was well enough to be her main carer during the last weeks of Jean’s life, which provided him with a degree of comfort.
John has since told me that he would no longer like to have any assisted ventilation or intensive care should his breathing deteriorate in the future. What matters most to him now is being well enough to walk around his garden, listen to the birds and watch the squirrels.
I can relate to that!
Dr Paul Baughan is a GP in Dollar, and National Clinical Adviser for Ageing and Health with Scottish Government.