Helen Mason, MBA, RN, is spending her fellowship year at IHI as part of The Commonwealth Fund's Harkness Fellowships in Health Care Policy and Practice. Before Helen started her Fellowship, she was Chief Operating Officer of the Bay of Plenty District Health Board in Bay of Plenty, New Zealand.
The survey reports that 78% of older adults in the US said they had talked to a family member, friend, or health professional about the care they want if they aren’t able to make decisions for themselves. Two thirds said they had a written plan naming a health care proxy, and 55% said they had a written plan for the treatment they want at the end of life.
The results were met with surprise by some working in the field of advance care planning. This isn’t what they experience in their everyday practice. Advance care planning, an ongoing process of shared planning for future health care, gives individuals the opportunity to express their preferences for care, based on their beliefs and values, and to understand their current and expected future health status, and the treatment and care options available.
To be truly effective, advance care planning needs to operate as a system. There need to be discussions about the person’s preferences for end-of-life care, a written plan, and a named health proxy. To respect and act upon these wishes, this important information needs to be reliably available across health settings. Too often, a person has completed a document but it isn’t available to health professionals, or they haven’t spoken to their loved ones about it. Often the services that they value, like palliative care, hospice care, or social supports, aren’t available. Too often, the health system isn’t ready or able to respect their wishes because clinicians haven’t been supported to develop the important skills needed for end-of-life care. An effective advance care planning system requires all of these interdependent elements to be available.
Think of Susan, a 45 year-old woman with lung cancer, who is allergic to penicillin. She’s well known to the health professionals caring for her. Imagine that she tells no one about her allergy. Or that she tells someone about it, but it isn’t recorded in her electronic medical record. Susan gets pneumonia and is taken to the emergency room, unconscious, unable to speak for herself. There, she is given a penicillin-based antibiotic by those who have cared for her for years and are wanting to do their best by her, but don’t have this important information. Care which she doesn’t want and which will be harmful to her.
It’s hard to imagine this happening. We provide excellent training for health professionals on allergies. We have systems for checking and tracking allergies, ensuring we treat each patient the way they need to be cared for. The electronic medical record allergy field can’t be blank. If it was, clinicians would be outraged. “I don’t know how to care for this patient without knowing what their allergies are,” is the likely comment. The reality is that we wouldn’t let this happen with an allergy, so why do we let it happen at the end of life, our final opportunity to get care right?
Part of the reason is that many find these conversations difficult to initiate. There are some great initiatives encouraging and supporting families to have these conversations, including The Conversation Project, with resources to help people explore what’s important to them, and talk about their wishes with their loved ones.
Initiating and having the conversation is difficult for health professionals as well. They need support to have end-of-life discussions, to develop the skills to manage these conversations well. They need the time to have the conversations. Medicare now has a code for these conversations, but has yet to pay for them. Proponents say the way to start valuing these conversations is to pay for them, requiring input from policy makers and funders.
Ensuring that an individual’s preferences are conveyed to everyone caring for them means this information needs to be in the electronic medical record. It’s encouraging that Epic, which delivers the electronic health record for over 40 percent of the US population, now has an advance care planning module. The number of health systems currently using this module is, however, extremely low.
Respecting the patient’s wishes means having the range of appropriate services available to meet them. That may be active treatment or, alternatively, having good access to palliative and hospice care. Often what people value most is remaining at home, requiring support from social services. The Institute of Medicine report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, highlights the gap between the services that are currently funded and what people want and need, an issue for policy makers and funders to address.
So while it’s encouraging to see the results of the Commonwealth Fund survey, there’s no room for complacency. Let’s not hear the headline statistics and think “we’re all set.” If the only thing that’s happened is having a conversation with family, or writing a document, it’s almost not worth having; having one piece of the chain doesn’t get you what you want or need in the end. The International Survey identifies one small piece of what’s needed. To make these conversations really count, to respect these wishes, will take the efforts of individuals and their families, health professions across the system, educators, policy makers, funders, and more.
