Have the conversation about your wishes for serious illness or end-of-life care
- Category: General, Primary Care
- Posted On:
- Written By: Boulder Community Health
Some of the most important — and most difficult — conversations you'll ever have are about your wishes for a serious illness or the end of your life. Jean Abbott, MD, University of Colorado Hospital and Boulder Community Health Ethics Committee Member, and Alyssa Carlson, MD, BCH's Medical Director for Ambulatory Quality Improvement and Population Health, discuss why you should talk about your wishes for your final days, and how to go about it.
Not One, But Many Conversations With Your Doctor
Many people avoid discussions about serious illness or end-of-life treatment, largely because talking about these topics can be uncomfortable and scary. In fact, one study found that only 7% of people have talked with their doctors about what’s important to them.
“It’s one of those things people don’t like to talk about and then we have this black box,” stated Dr. Carlson. “We want to take your wishes into account, but we'll never know what they are if you don't share them with us. So, it’s important to have these conversations.”
Dr. Carlson said at the heart of these kinds of conversations is finding out what matters most to you. “We don’t take a side on this. If your preference is that you’d rather your life be potentially shorter but not suffer, that’s critical for us to know. If comfort is less important than extending your life, we want to know that, too. Don’t feel reluctant to tell us either way.”
Keep in mind that "the conversation" with your doctor usually ends up being a series of conversations — all of which become easier once you start. You can initiate the first conversation at your next in-person or virtual wellness visit. But you don't need to cover everything right then. You can schedule more lengthy discussions later during what are called "advance care planning" appointments.
"Your wants and priorities are then included in your medical record in case you're unable to speak for yourself," Dr. Carlson explained.
She said another thing to keep in mind is that what matters most to you for serious illness or end-of-life care can change over time, so the conversation with your doctor needs to be ongoing.
Designate a Medical Decision Maker
Talking with your loved ones and designating a medical decision-maker is another important step in making your wishes known.
"Over half of us will not be able to participate in decisions near the end of our lives, which is why it is so important to designate someone who can talk about your goals, values and preferences. It’s also important for the family because a limited understanding of a loved one’s end-of-life care wishes can lead to serious distress,” Dr. Abbott stated.
There’s a Colorado law that makes it especially important to name a person who would speak on your behalf.
Dr. Abbott explained, “In Colorado, if you don’t designate the person who you want to make decisions and you haven’t put it in writing, the law says no one can automatically make decisions for you – not even your spouse or adult children.”
Instead, Colorado law tells doctors to locate all “interested persons” – usually family members, but also close friends – and help them select one who knows the person best to serve as a patient's health care agent.
“The health care provider gathers people who care about a patient and, with the doctor, they decide as a group who can best speak for the patient. Everyone has an equal voice at the table. Unfortunately, family members often disagree,” said Dr. Abbott.
How Do You Prepare?
Start thinking about who you would you want to make medical decisions for you if you couldn't. Dr. Abbott said you should choose someone who:
- Knows what matters to you.
- Can make difficult decisions based on what’s learned from your medical team.
- Can speak for YOUR interests (rather than their own, perhaps).
- Is available and, in the best case, geographically close by.
As you prepare for your end-of-life conversations with your medical decision-maker, consider what matters most to you such as:
- What kinds of treatment would you want or not want (for example, attempted resuscitation if your heart stops, a breathing machine, feeding tube)?
- How long would you wish to receive aggressive medical care in hopes of extending your life?
- Where would you want or not want to receive care (at home, in a nursing facility, in a hospital)?
- When would it be okay for your doctor to shift from a focus on treatment to a focus on comfort care alone?
“There are no correct answers to these questions. But sharing the answers can relieve your agent or loved one from having to make very hard decisions without knowing what your answers would be,” said Dr. Abbott.
Put Your Wishes in Writing
In Colorado, there are four main types of advance directives, which are written instructions for a person’s end-of-life health care preferences:
- A CPR directive is a medical order that instructs providers not to attempt resuscitation if a person’s heart or breathing stops.
- Living Will tells medical providers what treatments you would want them to use or not to use if you are “terminal” or in a vegetative (permanently unconscious) state. However, living wills are not enough to allow someone to make medical decisions on behalf of another in most situations.
- Medical Orders for Scope of Treatment (MOST) is a form for those who are seriously or chronically ill and in frequent contact with providers. It converts your wishes into orders to be followed by health care professionals based on your current serious health status.
- Medical Durable Power of Attorney (MDPOA) allows people to name a person to make medical decisions when they are unable to.
"The Medical Durable Power of Attorney (MDPOA) form is the written instruction to say who you want to be your decision-maker – the person who speaks for you and should know what makes life meaningful for you,” Dr. Abbott said. “And this is the most important document you should complete.”
Dr. Abbott also stressed that you should consider providing your medical decision-maker leeway.
“We aren't good at predicting what we might want in the future. What you wrote down five years ago may not be in your best interests right now,” she said. “To give your surrogate leeway, you can write in the MDPOA form ‘I’d like my agent to be able to make decisions with my doctor that are in my best interests knowing what my values and what matters me - and not necessarily the numbers I put in my advanced directives.’ ”
She also stressed not to forget that the key is to talk to your agent with MDPOA authority about what is important to you.
Take the time now to plan for your future. Schedule an advance care planning appointment with your doctor. If you are a Medicare beneficiary, Medicare will cover appointments for advance care planning.
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