Highlights | Hope for the best, prepare for the worst
- Everyone, regardless of age or health status, should make an advance care plan.
- An advance care plan can help you receive care that aligns with your goals and wishes if you are too sick to direct your care team.
- Talking to your primary care physician is a good place to start.
- Having conversations about end-of-life care can be challenging, but it ensures your wishes will be respected.
Making a healthcare decisions plan, or advance care plan, is one of those to-do list items that a lot of us put off. And it’s understandable that thinking about death — especially our own or our loved ones’ — can be emotional and challenging.
But making a care plan is worth the uncomfortable conversation because it ensures that your wishes are respected. Plus, it takes pressure off of your loved ones when the time comes.
Who needs to make a healthcare decisions plan?
Sharma has specialized in palliative care for over 10 years and says the most gratifying part of her job is being able to make a difference in situations that are challenging, like end-of-life care.
“I felt like this was a place, as a physician, that I could make a difference in supporting families and making sure that patients received the care they needed and wanted,” says Sharma. “It is emotionally heavy work and it’s hard to share grief with patients, their families and other clinicians, but what keeps me going is knowing that I can make an impact at a time when people are most distressed and most vulnerable.”
From her experience helping patients and families through their toughest moments, Sharma recommends being proactive and having the end-of-life care conversation with your healthcare provider and loved ones now.
Making the tough choices
Here’s what you need to decide and how to make your requests official.
Durable power of attorney for healthcare
Everyone should complete a durable power of attorney for healthcare. It’s a legal form that names a healthcare proxy — someone who make decisions for you if you are unable. Even healthy people with no chronic medical conditions should fill out this form and name their healthcare proxy.
“We never know what the future holds,” says Sharma. “Choosing a durable power of attorney for healthcare is about being prepared — hoping for the best but preparing for the worst.”
Sharma recommends picking someone who can handle the pressure and do right by you by enacting your preferences and wishes.
If there is an emergency and you haven’t named your healthcare proxy, your legal next of kin, as determined by state law, will make the decisions. If you have no next of kin able to fulfill the role of proxy, you are assigned a guardian appointed by the state.
Advance healthcare directive
Accompanying your durable power of attorney for healthcare document will be guidance for your healthcare proxy on how to make your medical decisions, which is called an advance healthcare directive.
Sharma says this is an opportunity to define your preferences on the use of medical interventions like cardiopulmonary resuscitation if your heart were to stop working, use of a ventilator if you were unable to breathe on your own, or use of artificial nutrition and hydration if you could no longer retain food and fluids without assistance.
“The key distinction to make is do you want to pursue any and all treatments regardless of your quality of life or do you want to focus on quality of life for whatever time you have left,” says Sharma.
For most people, this directive is important if they have a serious illness or if they were to be in an unexpected medical situation or accident where they end up in the hospital and cannot speak for themselves.
Healthcare value form
If some of these decisions feel too specific, like whether or not you want artificial nutrition and hydration, a healthcare value form is a great tool to help. Many advance healthcare directives include this form, but you can also complete the form separately and share it with your provider.
Some forms use a sliding scale to help clarify what you care about most, with topics like preserving your quality of life, living as long as possible regardless of quality of life, being independent, and dying in a short time rather than lingering.
A healthcare values form can be the baseline of what your healthcare wishes are so your provider can help you align your care with your goals, and answer some of those more specific questions that might be a lot to think about right now.
Physician Orders for Life-Sustaining Treatment
The Physician Orders for Life-Sustaining Treatment (POLST) form is a way to articulate a person’s preferences related to end-of-life care directly to a healthcare provider and is used by individuals who have serious health conditions.
This is different from an advance healthcare directive. It is a specific order for care team members to follow rather than guidance for your proxy to follow. Think of a POLST as an addition to your advance directive that allows healthcare providers to act immediately in an emergency.
You don’t need a lawyer, but you will need signatures from your physician and a witness.
Who do I talk to about making these decisions?
Consider your options with your primary care physician or a specialist if you are dealing with a serious illness like cancer or advanced heart disease.
The hardest and most important conversation is talking to loved ones about your wishes.
“The biggest barrier is that it is really hard to talk about death and dying. People would rather not talk about those things,” says Sharma. “But it’s better to be prepared and have the hard conversation than pretend it’s not going to happen.”
And it’s often not a one-time conversation. It can be a process, one that might take several conversations for you to realize what you want or to feel more comfortable talking about worst-case health scenarios with those you love.
Sharma suggests reevaluating your preferences periodically as your life conditions change. This can also help normalize the conversation with your loved ones and make sure you are receiving care that fits every stage of life.
Resources for starting the conversation
- PREPARE is a step-by-step program with video stories to help you talk with your doctor and fill out an advance directive form to put your wishes in writing.
- The Conversation Project offers tools, guidance and resources to begin talking with loved ones about your and their wishes.
About the expert
Alongside the work she does in the clinic, Sharma spends about 75% of her time doing research around healthcare equity and palliative care.
“I am interested in advancing our understanding of how race, ethnicity, culture and gender influence how we talk about serious illness and how people make decisions in that setting,” she says.
She wants to decrease racial and ethnic disparities and support the most vulnerable communities in getting equitable, goal-concordant end-of-life care.
One of her current undertakings is a project that focuses on patients with limited English proficiency and aims to improve how healthcare providers and systems can support people with serious illness that are facing language and cultural barriers.
“It’s a tough topic for everyone to think about, but when you add on cultural and language barriers, it can be especially distressing,” says Sharma. “We want to find ways in the healthcare setting to support those vulnerable communities.”
Learn more about Rashmi Sharma’s work in addressing healthcare equity in end-of-life care.