I recently met with a patient during a palliative care consult. She was feeling good, and we had lovely discussions about what was important to her. She cherished her family and living independently in her apartment, where every day she went outside to sit on the same bench and watch the people go by. We spoke about her wishes for the end of her life and who would make decisions for her if she were unable. Later, these conversations were crucial to help her family make decisions regarding her medical care.
Monday, April 16 was National Healthcare Decisions Day (NHDD) and starts a week of awareness and education about the importance of making your decisions for end-of-life care known to your loved ones. These are difficult conversations to have. The National Conversation Project Survey done in 2013 showed that 90% of people say that talking with loved ones about their end-of-life wishes is important, yet only 27% of people have done so. The Massachusetts Coalition for Serious Illness care did a survey in 2016 showing that almost half (46%) of the population surveyed had not discussed their wishes for serious illness care with loved ones. Many people are understandably uncomfortable thinking and talking about the end of their lives and planning for this.
We also know that as in other areas of healthcare, there are great disparities in advance care planning. According to the 2014 National Hospice and Palliative Care Organization (NHPCO) African-American Outreach Guide, about 8% of African Americans, compared to 43% of Caucasians, have an advance directive or will. This holds true in Massachusetts. Men, people of color, and those without a college education are significantly less likely to have discussed their wishes with loved ones.
Making sure you’ve designated someone to make decisions for you if you can’t, and that your loved ones know your priorities and your wishes, is a way to ensure the care you get is the care you want. National Healthcare Decisions Week is devoted to helping people make these decisions and communicate them with their loved ones as well as with their doctors. We encourage you to consider three main points:
- What matters most to you? What are your priorities in life and in thinking about end of life?
- Who would you want to make healthcare decisions for you if you were unable to make them (i.e., Health Care Proxy)?
- When can you talk with your designated health care proxy about your wishes, and document them in writing?
It’s important to reflect on, clearly communicate and document your wishes for end-of-life medical care to your loved ones and caregivers. Knowing how you want to be taken care of when you are no longer able to make your wishes known not only allows your provider to tailor treatment to suit your goals, but it also helps guide those who care about you during that difficult time.
Here are some great resources to help you learn more about getting the conversation started:
- The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Starting with a conversation, it helps create a shared understanding of what is most important to you, not just focusing on medical decisions.
- Aging with Dignity highlights Five Wishes, a document which helps you think about your personal, emotional and spiritual needs as well as your medical wishes.
- The NHDD website is resource-rich in providing education and information about advance directives and how to approach the planning and recording of your preferences for your care.
- The American Bar Association has compiled a helpful guide that defines what a healthcare proxy is and how to legally designate someone to represent you and your end-of-life wishes.
- Caring Connections offers free, state-specific advance directives for all 50 states and DC that meet the legal requirements for each state.
- Engage with Grace has created simple, clear tools to guide you and your loved ones through this conversation so that all aspects of your wishes can be revealed.
We encourage everyone to consider their health care decisions and start the process of advance care planning. Please also speak with your health care team, including your primary care provider, about your wishes. At Atrius Health we strive to transform care to improve lives; help us provide the care YOU want.
Dr. Ariadne Mueller has been a palliative medicine physician with Atrius Health since August 2017 and now serves as the Lead Clinician for the palliative care team. She is dedicated to providing compassionate care to all of her patients, with a specific interest in care of the underserved, particularly people of color and the LGBT community. She enjoys spending time with her family and being outdoors.
Sarah Paez, GNP, ACHPN has been a nurse practitioner with Atrius Health since 2010 and is currently Clinical Nurse Manager for the Intensive Home-based program and the Care in Place program. She cares for patients on the South Shore. When she is not working you might find her singing with the Metropolitan Chorale, baking, or out in her kayak.
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