Resolving disputes: Health and welfare attorneys tell us they need more support
There are significant gaps in the support available to enable health attorneys to make decisions for the people they love.
The number of health attorneys contacting Compassion in Dying’s nurse-led information line for support has remained consistently high over the last few years. Many tell us they need urgent help being listened to, and explain how difficult it can be to ensure they’re appropriately involved in the decision making process.
Last year we shared these experiences in our report,Rethinking Dying: lessons from an end-of-life helpline. The voices within it told a clear story: there is an urgent need for better support for attorneys as they take on their role as decision-maker.
People tell us that making an LPA gives them peace of mind. However, when it comes to be used, health attorneys tell us consistently that their views on the best interests of the person they care for are dismissed when trying to act as the decision-maker. This is particularly the case when doctors disagree with the decisions being made or when expressing their loved one’s desire to stop or refuse a life-sustaining treatment.
Dione’s story, told by her son Chris
“For more than two decades before she died, my mum, Dione, had repeatedly asked me to make sure that she would be allowed to die when she was ready to go. As her appointed health attorney I made her that promise.
“In November 2021 my mum had a stroke and was moved into hospital, the next week she suffered a heart attack followed by a second stroke. We knew mum was dying, and by this point there was no doubt what her wishes were: she wanted to die naturally without having her life prolonged. She was shouting for the world to hear ‘let me go home and let me die’.
“As her son and health attorney, it was my job to make sure the hospital respected her wishes. When I tried to explain what her wishes were and show them her advance decision to refuse treatment I was dismissed and mum kept being given antibiotics for life-threatening infections that I knew went against her previously expressed and recorded wishes.
“I had lasting power of attorney, I had her advance decision, it was very clear that she didn’t want her life prolonged and they should have stopped.
“When I was finally able to speak to the senior consultant, I had rehearsed what I wanted to say and I was ready to explain my mum’s wishes thoroughly. However, he opened that meeting by saying that he didn’t need to hear anything from me, he told me in situations like this they’d ‘do their best’ for their patients.
“I was shocked. As her health attorney I was being told by the senior clinician in charge that my views didn’t count.”
What Compassion in Dying is doing to help
Our research shows there are significant gaps in the support available to enable health attorneys to carry out their role and make decisions on behalf of their loved ones.
In-depth support service
We recently established a specialist, in-depth support service for people fighting for their loved ones’ wishes to be heard. We did this because many people were calling our information line telling us they could not find help when they needed it most. Our nurse-led, phone-based support service was set up to change that. Through it we help people who feel that decisions are not being made in their loved ones’ best interests, and support health attorneys who are being ignored.
When Compassion in Dying picked up the phone it was like somebody threw me a lifeline. They gave me the information and suggestions I needed to engage with the system as an attorney and fight for my mum’s wishes to be respected at the end of her life. Regular conversations with Compassion in Dying helped me navigate an unfriendly and confusing system and finally get the result mum would have wanted.
Chris
Public-facing information
We realised that existing resources for health attorneys focus on the responsibilities involved, disputes between health attorneys, or attorneys that abuse their power. The people we supported could find no guidance for what to do if there are disputes between health attorneys and health and social care professionals, or what health attorneys should do if they are not being included in decision-making.
We researched, developed, tested and published public-facing information for attorneys to support them in their role, which specifically addresses the needs identified above. We did this because people told us they could not find this information elsewhere.
The page explains how decisions should be made for someone who lacks mental capacity to make a decision in England and Wales. It explains what to do if someone’s wishes are being ignored, and includes information on mental capacity assessments, preparing for best interests meetings, mediation support and how to apply to the Court of Protection.
More support is urgently needed for health attorneys
Whilst our services play a vital role in supporting health attorneys to feel confident communicating their loved ones’ wishes, our capacity is limited and we know that we cannot deliver the scale of support that is needed.
At Compassion in Dying we believe more support, nationally, is vital to ensure health attorneys can act on behalf of those they love, in the way the law intended. This should include a clear process and service for attorneys to get help when they face barriers to making decisions. The Office of the Public Guardian provides such a process if someone has concerns about an attorney, but attorneys themselves should receive the same level of support to fulfil their duties.
Clearer lines of support for attorneys would forge a more compassionate approach to end-of-life decision making where people’s autonomy is fostered, and their choices are respected.
We are also calling for mandatory training for healthcare professionals on end-of-life decision making under the Mental Capacity Act. Almost every person who shared their story with us has stressed the need for better support for healthcare professionals so that they understand people’s rights to make decisions and can feel confident respecting them.
We’d love to hear from you if you’d like to talk more about any of this. Do get in touch.
