If you were at a health crossroads and unable to communicate, would someone you trust know exactly what care you do or don’t want? Would they be empowered to make those decisions on your behalf, even when other family members disagree? Best case scenario: Would they have that information already written down for peace of mind?
If not, it can create family conflict during an already difficult time. And it can lead to care decisions you wouldn’t have made if you could speak for yourself.
Which is why it’s crucial to set aside time now, when you can.
“It isn’t about being depressing. It’s being pragmatic,” Jennifer Ritzau, MD, HopeHealth’s medical director of palliative care. “At some point, your health will decline. It’s going to happen to all of us. How do we talk about it courageously now, so that when it happens, we have a plan?”
1. Fill out these free documents.
These documents answer certain questions in case you are no longer able to articulate or make your own health decisions. They’re easy to fill out, and completely free. Amid the stress of a health crisis, they can be a profound gift to your loved ones.
Living will
- Answers: “What type of medical care would I want to prolong my life?”
- If you are near the end of life and unlikely to recover, this spells out the life support treatments you would and would not want used to keep you alive — like resuscitation and life support such as feeding and breathing tubes.
- It also notes other preferences like organ donation.
Durable power of attorney (DOA) for health care
- Answers: “If I am no longer able to articulate or make my own health decisions, who do I want to speak on my behalf?”
- This document identifies a trusted person (referred to as your DOA, healthcare agent, proxy or surrogate) who knows your wishes and will work with your health team to ensure you get the kind of care you want.
- If you live in a state like Rhode Island, which does not recognize spouses, adult children or anyone else as a patient’s proxy by default, it’s especially important to name and record a DOA. “One of the most powerful things you can do is name a healthcare agent and make sure that that agent is really clear about what is important to you,” says Dr. Ritzau.
Quick links
- In Rhode Island: A Gift of Preparedness contains both a living will and DOA.
- In Massachusetts:gov suggests this living will (“personal directive”) and this DOA (“health care proxy”).
- In other states: Try your state’s department of health, your local library or AARP.org.
> Read: 7 common myths about palliative care
2. Consider these values-based questions for other medical decisions.
Yes, a living will and DOA are crucial documents for your family to have on hand if you’re ever in a health crisis. But before getting to that point, they may face countless other medical decisions on your behalf. For many, they’ll need to understand your wishes and beliefs about quality of life.
“The medical stuff can be explained to your loved ones. But your definition of quality of life is something you need to get clear with them,” says Dr. Ritzau.
Try:
- What things in life matter most to me?
- What would I want my health team to know about me?
- Is there something in my life that I can’t imagine living without? If I no longer had that ability or activity, how would that change my priorities for care — for example, continuing aggressive treatment versus focusing on comfort?
- What is my ideal end-of-life scenario? Who do I want to say goodbye to?
> Clinicians, sign up: Complex Care Conversations: Communicating About Serious, Progressive Illness
3. Share all of the above with your loved ones.
Once you’ve filled out your living will and DOA and considered the above questions, share everything with your family, friends and care team.
Living will and DOA
- “These documents are useless in a safety deposit box — no one will be able to use them when things go south. Give copies to your healthcare agent, your family, your clergy, anyone who might be called when you’re in the ER,” says Dr. Ritzau.
- Anyone with a copy can help your medical team connect with the person you chose as your surrogate decision maker. And by clarifying and sharing that decision in advance, it may prevent conflict among your family members too.
Quality of life considerations:
- Once you’ve considered the values-based questions above, and any others that come to mind, write down and share your thoughts with the person you’ve selected as your DOA. Even better: Have a conversation with your whole family, so everyone is on the same page. Do this now, before crisis hits.
- “All of this can be helpful when a medical team turns to your surrogate decision maker and says, ‘Do you want your loved one to have X, Y or Z?’ They’ll know what you value,” says Dr. Ritzau.
> Read: How do palliative social workers help people living with serious illness?
Make these health decisions today.
When Dr. Ritzau and team first met one patient, she couldn’t speak due to a massive stroke. But thanks to a note she’d written many months before, the team knew exactly what she wanted.
“If you are reading this, something has gone wrong,” the patient had written in swooping cursive. “Let me tell you who I am: I have been a teacher all my life. I am a loner. I love classical music and nature. I hate Jell-O. I love fuzzy socks.”
That simple note helped her health team take better care of her, in ways both big and small.
“We were able to know: She doesn’t want any Jell-O. She doesn’t want to be out near the nurse’s station with all the activity. She wants to be in her room, listening to classical music and looking out at the trees,” says Dr. Ritzau.
If and when your own health someday declines, that’s how your loved ones can help too — but only if they know what you want.
“As your health team, we’ve got the medical stuff,” says Dr. Ritzau. “What we need is for your loved one to know you and to be your voice when you no longer have one.”
Questions about palliative care for you or a loved one? Contact HopeHealth Hospice & Palliative Care at (844) 671-4673, or email us at Information@HopeHealthCo.org.