Thinking about end-of-life care can be uncomfortable — and easy to put off if you are young and healthy.
But putting some thought into your advanced healthcare choices can provide both you and your loved ones some peace of mind.
“It’s hard to know what you might want when seriously ill or at end of life. It requires conversations with your trusted healthcare agent and healthcare provider,” says Dr. Lucille Marchand, an expert in palliative and integrative medicine who sees patients at UW Medical Center – Montlake.
To get you started, here’s your primer on advanced care options and what you should know before writing a living will.
What is a living will?
When it comes to end-of-life care, the terms “living will,” “advanced healthcare directives” and “directive to physicians” all get thrown around.
This is because different states have different names for legal documents that essentially all do the same thing: tell your doctor what medical treatments and life-saving measures you would like to receive at the end of your life, particularly in situations where you are unable to communicate these wishes.
In Washington state, this document is colloquially called a living will and officially termed a Health Care Directive. A lawyer can help you write this document, or you can use free, online tools to create it on your own.
A living will differs from another common healthcare directive in Washington: physician orders for life sustaining treatment (POLST).
A Living Will or Health Care Directive can be created by anyone, regardless of health status, and needs to be notarized or witnessed by two people who are not related to you. In contrast, a POLST is intended for individuals who have a serious health condition, and it is completed with a healthcare provider.
What’s included in a living will?
In Washington, a living will includes what treatment you would like to receive if you are terminally ill or permanently unconscious, which Marchand defines as a state where you aren’t going to regain consciousness or would be unconscious for a very long time.
Treatments covered in a living will include artificial nutrition, artificial hydration, artificial respiration, CPR (including ventilation, medication, stimulants and other treatment for heart failure), surgery, blood dialysis, blood transfusion, medication and pain management.
If all those terms sound like medical mumbo-jumbo to you, you’re not alone.
One of the difficulties of completing a living will is the document uses plenty of medical jargon without specifying what those terms mean. Moreover, in the document you have the option to either opt in or out of the treatments, but in reality, the best medical practice often varies from case to case.
“The document can sometimes be a bit more technical than realistic,” says Dr. James Fausto, medical director for palliative care at UW Medicine.
For example, making a decision in advance on artificial nutrition and artificial hydration can be tricky without knowing what your diagnosis, prognosis and clinical situation will be, Marchand says.
Doctors will never withhold food and water, so you will always receive sustenance, even if you opt out of artificial nutrition and hydration, she explains. Instead, these terms specifically refer to tube feeding or intravenous feeding, which can be lifesaving in some cases, like neurological conditions that prevent swallowing, but ineffective and even painful in others, like in cases of dementia.
The takeaway? Writing a living will isn’t as straightforward as one might hope, and it’s important to clarify that what you are choosing is what you actually want — as well as recognize that this may change.
What do you need to know before creating a living will?
With all that in mind, how do you go about making advanced healthcare decisions?
Here are three key points to make end-of-life decisions a little easier.
Select a durable power of attorney for healthcare
Both Marchand and Fausto believe that when it comes to end-of-life care, the most important thing to do is choose a durable power of attorney for healthcare, or a healthcare agent.
“Basically, you assign a person that can give instructions about the spirit of what you would want, should you not be able to speak because of a condition,” Fausto says.
The idea is that you enable a trusted person who understands your preferences to make healthcare decisions and advocate for you in a medically high-stakes situation. This individual must be 18 or older and cannot be an employee of your healthcare provider, unless that person is a relative.
Selecting a healthcare agent is especially important because medicine is always advancing.
In the case of a living will, you could unintentionally deny yourself access to an effective new treatment because of what you wrote in your directive years before. In contrast, your healthcare agent can decide if new medical treatments are right for you based on their knowledge of your healthcare wishes.
One key thing to note is that if you live in Washington state, are over 18, single and haven’t chosen a healthcare agent, then the position defaults to your parents. If you are over 18 and married, it defaults to your spouse. And if you’re over 18, single and do not have living parents, it defaults to your siblings. From here, your default healthcare agent will be the next closest family member, be it an aunts/uncles or cousins, or if you do not have known relatives, a friend who knows you.
Even if your parents, partner or siblings are your healthcare agent of choice, it’s important to let them know and discuss what care options you would prefer so that you avoid future confusion between parents or siblings over your healthcare decisions.
And if your legal next of kin isn’t your desired healthcare agent, it’s important to select your preferred individual instead.
Consider your healthcare values
Before you start filling out your living will (or even decide to complete one in the first place) it’s important to take some time to think about your healthcare values.
A healthcare value form is a great tool to help you do this. Several living wills include a healthcare values form, but you can also complete the form separately and share it with your healthcare agent and doctors.
In essence, this form is where you can use plain English to describe what conditions and situations you are and are not OK with when it comes to certain end-of-life care decisions.
Some statements you might include are, “I’m worried about feeling like I’m choking, please do anything you can to relieve me of that stress” or “I want to spend my last days at home.” You can also indicate any religious, cultural or traditional practices that are important to you regarding your healthcare.
Some forms also use a sliding scale to help clarify what you most care about, 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.
And if all of this is feeling overwhelming, it’s completely understandable. You don’t need to know every preference right now. The idea of this form is to give a baseline of what your healthcare wishes are so that you can convey these to your healthcare agent and your doctor.
Start the conversation
Once you’ve determined what your values are, it’s time to share them with your healthcare agent.
Talking about serious illness and death can feel taboo and emotional, but there are a lot of resources out there to help make the conversation a little easier, from the death over dinner movement to end-of-life care card decks.
For Fausto, the most helpful way to approach the topic is when you are asking someone to be your healthcare agent.
“Start by sharing if you’ve ever been through an end-of-life experience with a loved one and what things concerned you about it, along with what would or would not help you if you were in that situation,” Fausto says.
You can also bring up the conversation when an accident or healthcare-related incident comes up in the news and share what care you would want in that situation, Marchand notes. The conversation can be as serious or casual as you desire, so long as you are able to convey what matters most to you.
Once you’ve started the conversation, you can decide whether or not you would like to complete a living will or simply have a healthcare agent designated.
“For some people, creating a living will is going to meet a need they have to propose a plan. For others, it’s not going to fit them at all,” Fausto says.
Ultimately, whether you complete a living will, select a healthcare agent or do both is up to what you are comfortable with and prefer. The important piece is that you take some steps to be prepared.