What Matters Most in Advance Care Planning: Conversations with Loved Ones
Learn how to choose someone you trust to speak on your behalf and how to have conversations that prepare them for that role.
In some aspects of our lives, planning for the unexpected is the norm. Even though you are expecting a great vacation, you take out travel insurance because you want to protect yourself from any “what ifs.” Advance care planning works the same way. It helps prepare for the uncertainty and changes that we may face in our health in the future.
As a palliative and geriatric care physician at the Deanna and Sidney Wolk Center for Memory Health, I often talk with patients and families about the importance of advance care planning. It’s also something I’ve experienced personally, both in planning for my own future and during my dad’s medical care.
While filling out advance planning documents, such as health care proxies, is an important step, another essential part of the process is having conversations with your loved ones about what matters most to you. It is through these open discussions that those you choose to represent your voice can fulfill this role effectively.
What is advance care planning?
The National Council on Aging defines advance care planning as an “ongoing process of discussing, deciding on, and documenting your future medical preferences, values, and goals in case you become unable to communicate for yourself.”
In other words, it helps preserve your voice and align your medical care with your personal beliefs and values — even when you might not be able to speak for yourself.
If you haven’t put plans in place, you’re far from alone. Only 37% of Americans have engaged in advance care planning in the event of a serious medical event or illness. Even among adults over 65, fewer than half have completed their advance care planning documents.
Understanding advance care planning
Several documents, known as advance care planning directives, are part of the process. Understanding them is an important step in planning ahead. Our previous blog post explores advance care planning directives in greater depth.
Health care proxy
A health care proxy lets you name someone who can make medical decisions on your behalf if you can’t communicate for yourself. In Massachusetts, this is a legally valid document that does not require a lawyer to complete. It does require two witnesses, who cannot be your health care proxy, to sign the document.
A physician or nurse practitioner activates the proxy if they determine that you cannot make complex medical decisions, such as in cases of cognitive decline, serious injury, or illness that causes confusion or altered consciousness.
Durable power of attorney
A durable power of attorney gives someone the authority to manage your financial and legal affairs. It differs from a general power of attorney because it remains in effect even if you cannot make your own decisions.
You can define what your durable power of attorney can and cannot do, such as granting them access to your bank accounts but not allowing them to sell your property.
Living will
A living will outlines your care preferences if you become unable to communicate them. It can be a helpful guide to the choices you would make under certain conditions, but it has limitations. Physicians are not legally required to follow a patient's living will in the state of Massachusetts, and it can sometimes be vague or open to interpretation.
MOLST and POLST
Medical Orders for Life-Sustaining Treatment, or MOLST, and Physician Orders for Life-Sustaining Treatment, ot POLST, are portable medical orders that can guide immediate medical treatment for people with serious illnesses. I’ll talk more about these in an upcoming blog post!
Choosing your health care proxy and durable power of attorney
Selecting a health care proxy and durable power of attorney is an important decision. The same person can serve in both roles, but they don’t have to.
You may prefer to name one person in your life who is better suited to handle financial matters as your durable power of attorney and another who is more comfortable advocating for your care needs as your health care proxy. It can also be helpful to consider your family dynamics and communicate your decision clearly with loved ones to help minimize potential conflict.
While there isn’t necessarily one “right” choice, taking the time to consider the following may help guide your decision when choosing your decision-makers:
| Consideration | Durable Power of Attorney | Health Care Proxy |
|---|---|---|
| Core responsibilities | Manages financial, legal, and property decisions on your behalf | Makes medical decisions on your behalf |
| Trust | Someone familiar with your wishes and values, whom you trust to act in your best interest | Someone who deeply understands your values, religious beliefs, and preferences |
| Decision-making ability | Responsible, organized, and able to manage complex financial matters | Emotionally resilient and able to make logical decisions under high stress |
| Communication skills | Able to communicate clearly with financial professionals and other family members | Able to have difficult conversations and assert your wishes to medical providers and other family members |
| Willingness to act | Able to make important financial decisions under pressure | Able to make tough medical decisions without letting their own feelings override your wishes |
| Availability | Accessible for ongoing or time-sensitive financial matters | Lives nearby or is able to be contacted if a medical situation arises |
Conversations make your wishes clear
Documents matter, but conversations are what make your wishes clear. Choosing who will speak for you and completing documents are important, but they should be a starting point for deeper discussions.
While documents can name your decision-makers, they don’t fully capture what you care about. That’s why having conversations is so important. Make sure both your health care proxy and providers have updated copies of your documents, and take the time to talk with them about your values and preferences.
You might talk about:
- What gives your life meaning and purpose
- What is most important to you by way of connections, sources of enjoyment, and function
- Whether you wish to prioritize the quality of life or the length of your life
- Your definition of an acceptable versus an unacceptable quality of life
- What level of independence matters to you now and in the future
Revisit these discussions as your health or circumstances change! If you’re not sure how to start, I often recommend The Conversation Project and Honoring Choices Massachusetts as helpful resources. They offer guided discussions about your values or preferences, including guidance for caregivers of people living with Alzheimer’s disease and other dementias.
A personal perspective on planning ahead
I’ve experienced just how impactful conversations and future planning can be. My father was fiercely independent, growing up in India and later building a life for himself and his family in the United Kingdom. He was a proud and private person and a strong proponent of education and self-advocacy. He was clear on numerous occasions about what mattered most to him as he grew older: maintaining his independence, caring for himself, and not living in a nursing home.
He took steps to plan ahead, including ensuring he completed the documents that designated my brother and me as his health care proxies and durable powers of attorney. Over time, my father’s health began to change, with increased frailty and increasing cognitive impairment as his diabetes worsened.
When he was hospitalized for uncontrolled blood sugars, we were able to advocate with the hospital staff to discharge him home with community services that we helped to arrange, instead of transferring to a residential facility, in keeping with his values and preferences. When he experienced a significant stroke, we were able to guide his medical care to keep him comfortable, rather than have him live with the lack of independence that he had always shared was unacceptable to him.
When he died within days of his stroke, we discovered that he had already planned and paid for his end-of-life services. At his funeral, we played Frank Sinatra’s “I Did It My Way” as a tribute to how he lived his life. Because of my dad’s choices, our family didn’t have to guess, scramble, or have any disagreements. We were able to focus on working together in supporting and honoring his wishes while he lived and celebrated how he took care of us, even after he died.
Looking for guidance as you plan ahead?
The Wolk Center for Memory Health is dedicated to helping individuals with all their memory health concerns. We help patients and caregivers navigate care decisions and can personalize resource coordination to support your journey in finding the care options that align with your goals, preferences, needs, and diagnosis.
Interested in learning more? Call the Wolk Center for Memory Health at 617-363-8600 or contact us online today.
Blog Topics
Learn More
Wolk Center for Memory Health
The Deanna and Sidney Wolk Center for Memory Health at Hebrew SeniorLife provides outpatient memory care services, in person and virtually, for people living with cognitive symptoms — and for their families and caregivers.
