Advance care planning, also known as anticipatory care planning, (ACP) is the process of thinking, having conversations about and recording the care you would like in the future if your health were to change.
There has been little research into the views of people with MS on advanced care planning and their experiences of having discussions with health professionals and family. This study was designed to get a better understanding of why, when, with whom, and how, people with MS and their families take part in discussions about ACP.
Researchers from the UK interviewed 27 people living with more advanced MS, 17 family members and 5 health professionals. Analysis of interviews identified three main topics: planning for an uncertain future; obstacles to taking part in discussions; and preferences for taking part in ACP.
Rather than not wishing to consider their future, many participants wished to do exactly this, often together with their families, although with some reservations. Several participants thought that sharing news of a transition to secondary progressive MS could be an appropriate time to introduce ACP. For people to feel comfortable about taking part in in ACP, it was vital that they had a trusting relationship with a known health professional who could introduce discussions tactfully and sensitively. This highlights the need for health professionals to be trained and skilled at supporting ACP discussions. Health professionals stressed that ACP should be an ongoing process and recorded in a way that decisions are shared across the various services.
Background
Advance care planning, also known as anticipatory care planning, (ACP) is the process of thinking, having conversations, about and recording the care you would like in the future if your health were to change. It’s a voluntary process which can mean that if, at a future point, you‘re not able to communicate your preferences and priorities, family members and health and social care professionals will know and will do their best to follow the wishes you’ve recorded.
There has been little research into the views of people with MS on advanced care planning and their experiences of having discussions with health professionals and family. This study was designed to get a better understanding of when, with whom, how and why, people with MS and their families take part in discussions about ACP.
How this study was carried out
Researchers from the UK visited people in their homes to carry out interviews. Participants included 27 people living with more advanced MS (people using walking aids, dependent on a wheelchair or largely bedbound) and 17 family members. People with MS included 16 women and 11 men aged between 38 and 75 years. A minority were from a Black, Asian or ethnically diverse background. The majority were living with a spouse or partner while five lived alone and three with parents.
The researchers also interviewed five health professionals from different specialities (neurology, neurorehabilitation, palliative and primary care) for their perspectives and experience of discussing ACP with people affected by MS. Interviews were analysed to draw out the main themes and concerns.
What was found?
Views of people with MS and their families
- Planning for an uncertain future
Although none of the participants had made an ACP, more than one third had taken other steps to plan for their future care, such as appointing a Lasting Power of Attorney (LPA) for health and welfare or drawing up formal documents to refuse certain treatments. The reasons for taking these steps were varied; some had experienced a health crisis, others wanted to formalise the right of the family to be involved in decisions regarding health and care. Some participants expressed concern that health professionals might not be aware of the existence of an LPA or other formal documents. It was also recognised that applying a decision to refuse treatment in a particular circumstance might not be as black and white as it appeared when initially drawn up.
- Obstacles to taking part in ACP
The interviews highlighted some of the barriers to getting involved in ACP, which included uncertainty about the course of MS and the “best time” for discussions; a belief that they could continue to adapt to new health challenges; a preference to live in the moment and not worry about the future; reluctance of health professionals to acknowledge MS progression or discuss potential future health issues; previous unhelpful experiences of ACP discussions. The need to focus on symptom management and other practical issues meant that there was often little time in appointments to talk about long-term planning.
- Preferences for taking part in ACP
Participants were willing to discuss ACP with their MS care team and felt that MS nurses were the most appropriate health professional to introduce the topic. It was important to have a trusting relationship with a health professional and conversations must be sensitive and empathic. The timing of discussions needed to take account of personal preferences although there was agreement that sharing news of a transition to secondary progressive MS could be an appropriate time to introduce ACP.
Views of health professionals
Health professionals all agreed that ACP should not be viewed as a one-time discussion or treated as a formal “tick box” exercise. Instead, given the long-term progression of MS, they felt that it should be an ongoing process of discussing and reviewing preferences and values built on a trusting relationship with patients and families. Like people with MS, they also expressed concerns about the uncertainty and long-term nature of MS compared to other conditions; this made it difficult to know if, when and how to begin ACP-related discussions. Some shared concerns about their lack of confidence when having these discussions. Health professionals also described situations where written statements or legal documents relating to ACP were not accessible when dealing with a medical crisis.
What does it mean?
The study provided a valuable and detailed account of the perception and significance of ACP for those living with MS and their families as well as health professionals who care for them. Rather than not wishing to consider their future, many participants wanted to do exactly this, often together with their families, although with some reservations. For people to feel comfortable about taking part in in ACP, it was vital to have a trusting relationship with a known health professional who could introduce discussions tactfully and sensitively. This highlights the need for health professionals to be trained and skilled at supporting ACP discussions. Health professionals stressed that ACP should be an ongoing process and recorded in a way that decisions are shared across the various services.
Koffman J, Penfold C, Cottrell L, Farsides B, Evans CJ, Burman R, Nicholas R, Ashford S, Silber E.
"I wanna live and not think about the future" What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.
PLoS One 2022; 17(5): e0265861.
Summary
Full paper
Whether you're living with a condition like MS or not, taking time to think ahead about what’s important to you, and what you might want to happen if your health changes, can be a useful exercise for you and those around you. This process is called advance care planning.
Discussing these wishes with those closest to you can help you feel more in control and give you peace of mind knowing that they understand how you’d like to be cared for if you were no longer able to share your wishes.
Our publication, Thinking ahead: setting out your wishes for your future care and treatment, supports you to understand and share your personal values and preferences with your loved ones and your healthcare team.
The resource was produced by Ali, a member of the Information team here at the MS Trust, as well as MS Specialist Nurses and subject experts, Ellie Garlick and Sarah Roderick. We brought the team together to shed some more light on the subject of advance care planning for an episode of our podcast series Breaking it down. Between them they discuss what is an Advance care plan and why should you have one, how can you write one, when should you consider writing one and who can help with writing one.
Listen to the podcast
Watch the video
