Talking to Loved Ones about Medical Decision-Making

November is Hospice and Palliative Care month, reminding us of the importance of conversations about medical decision-making, even though they may be difficult to start.  In this Q&A, Karen Knops, MD, Overlake's medical director of palliative medicine, shares guidance on how to talk with your family about end-of-life care preferences.

The pandemic has made me realize I don’t have any plans for end of life. Where do I start?

You can start with taking stock of what you do have. It is great to start these conversations well before they are needed, so that you or your loved ones don’t feel caught off guard in the middle of a crisis. A starting point can even be bringing up the idea and the benefits of talking about it. These are really conversations about values. The process of reflecting can help you and your family even if you don’t create a specific plan.

While we can share our plans with doctors and others taking care of us, one of the first things to consider is what family member or close friends might be in the position of needing to know your plans. Identify someone you would trust to be your spokesperson if you were too ill or could not communicate. Talking with this trusted person about your values and needs ensures that no matter what happens or how unique the situation, your medical team will understand your priorities. If you create documents to share your wishes, this person will be your advocate by using those documents as a guide.

Reflect on what your values are. One exercise is to imagine a situation where you or your loved ones are being told that time is limited. If time were down to months, weeks or even days, what would be important in those situations? Does it matter where you would be getting care? Some people feel strongly about being at home. Who would you want to be with you? How do you feel about needing a caregiver if your health and function were really reduced? It’s important to understand and to share with those close to you what you would wish your plan to be, and how you want to make it known.

There are tools for discussion at theconversationproject.org, and at prepareforyourcare.org.

How can I talk to my family about my wishes, and how do I talk to them about theirs?

Frame the conversation in terms of wanting to be prepared: “Because I care about you, I want to know what's important to you if you got really sick. I could see myself getting scared or anxious, and I would rather just know from you what you would want.”

The best time to learn information and have good conversations is when there's no pressure. You want to do it when you’re relaxed and can think clearly. Often, people feel uncertain when the topic is raised, but may then share their thoughts over time. It is often not one conversation but a series of them.

Sharing your wishes with your family or friends can also be a series of conversations. When there is no emergency happening, people mistakenly feel these conversations can wait. A great place to start is to say, “I think it's really a good time to talk about what would be important if you or I got really sick, would that be okay?” Acknowledging that the topic can be uncomfortable is important, and you can try to give them some control over the timing. If you’ve tried repeatedly but meet resistance, it might be a sign that the person is not comfortable hearing your wishes, and that can make it difficult for them to follow your wishes. You might consider appointing someone you know will be comfortable and someone you can talk to easily, as discussed below.

How can I put my plan in writing? Is there a specific document I should use?

The term “Advance Directive” refers to documents you create in advance of a medical emergency that direct healthcare workers. One type of Advance Directive is a healthcare power of attorney document. This lets you choose the person (a “healthcare agent”) who would speak on your behalf and a back-up person if the first person was not available, if you lost the ability to communicate for yourself. That person should be able to guide the medical team about what choices you would make based on your values and personality.

The second type of Advance Directive provides written guidance for what you would want in some specific, very serious medical scenarios. This is called a living will or an instruction directive. If you’re the kind of person who would want to focus on comfort if you knew your time was limited, you can say that in your document. If you’re the kind of person who would be willing to risk comfort to maybe see if you could get more time, by choosing treatments that require intensive care, you can say that in your document. Everyone is different, and those documents really help your medical team and your spokesperson or family involved in your care know what's important to you. Advance Directives (durable power of attorney for healthcare and the instructions of a “living will” directive) are done in advance, and don’t directly influence your situation unless you lose capacity to make decisions.

In contrast, some people with advanced age, a loss of function, or those living with a serious illness will use a document called “physician orders for life-sustaining treatment” (POLST). It is a bright green form in the state of Washington, and these are actual “doctors orders” that medical or emergency professionals will follow. While those other two documents can guide us and help us get more information about what a person wants, the POLST is a doctor’s order implementing your wishes. The bright green form is posted on the refrigerator or back of the front door in private homes so that emergency responders can find it, and people with this form carry a copy with them and share copies with any facility where they receive medical care.

Advance Directives can be created by filling out the forms (available at Overlake Clinics) and then having them witnessed by two people or notarized. The POLST is created through a conversation with a doctor or nurse practitioner, who cosign the form along with the patient, or if the patient cannot, their appointed healthcare agent or legal next of kin.

As you can see, these documents complement each other. All adults are encouraged to do the first two very early on, and then the POLST becomes necessary for those have a more serious illness or very advanced age.

Do you have advice for people who are caring for elderly parents?

First of all, self-compassion is really important, especially during the time of COVID-19. This is a time when things that were hard before have become extraordinarily difficult. It's a time when we're much more socially isolated, and that is a major challenge for a lot of caregivers. There are now a lot of online support groups, and being willing to shift to those virtual formats is really important because no one can do this alone.

Because things can happen suddenly with our elderly parents, it's a good idea to have a hospital “grab-and-go” bag. This bag could have a copy of your loved one’s Advance Directives or POLST, their medication list, a list of any medical providers who are involved in your loved one's care. It is good to keep a snack and water, and extra doses of medication in the bag in case of long waits. Keeping a list inside the bag of other must-haves—hearing aides, glasses, favorite pictures to cheer up the hospital room—takes a lot off your mind when you are in a hurry.

It’s important to also consider planning ahead for future caregiving needs. Just because someone's been stable for four or five years, the reality is that things can change overnight. If you became sick or if your loved one suddenly had a decline in their function, the plan that was working for a long time is suddenly a complete disaster. We encourage people to come in talk with social work and our palliative care team to walk through some scenarios, so that nothing catches you off guard.  Our team can also help by notarizing Advance Directives and guiding conversations about them and about the POLST form.

I realize if my loved one is hospitalized with COVID-19-19, it is unlikely I will be able to see them in person. How do I make sure their wishes are being fulfilled?

We want to do everything we can to make sure we're still communicating with families. That isolation and feeling of not having easy access to your loved one does nothing but increase anxiety. We all understand that, so the key is check in and find out what the latest visitor policies are because those are evolving, and they do change.

The second thing is to be aware we've become very creative with technology. Between the nurses who can be there at the bedside using phone services and video-assisted virtual visits with your loved one, we can do a lot to connect you.

It's also important to know if your loved one struggles with going between different languages, we have interpreter services available.

How has the pandemic changed palliative care?

Even before the pandemic, a big concept in palliative care consultation was to help families prepare for uncertainty. The pandemic has definitely illustrated that for everyone—how quickly someone's health can change—even young people or people who haven't had serious illness before. The heightened awareness of that uncertainty within the community has elevated our visibility. We're having a lot more requests for advance care planning or conversations about what it would mean if a person were to get COVID-19.

Also, palliative care has always been a sort of a bridge between the treating medical teams and the people who care the most about the patient and who know them the best. Because COVID-19 has caused isolation for patients, our hospital team has been on the phone to families pretty much all day, every day making sure that things were clear and that everyone's concerns were being heard.

Another change we've noticed is that we’re helping families with a loved one who has gone through COVID-19 and now needs a lot more care. We assist them in mapping out a long-term plan for what happens after the hospital and addressing what the implications might be if their loved one’s function isn't coming quite back as they were hoping.

What does an appointment in your office entail?

Once someone has been referred to us, we start by reaching out to the patient or caregiver by telephone to get their background. We go over the role of our team, ask how things have been going, what's working, what's not, and find out if there are any concerns about the overall picture. If there are decisions people are trying to make, and they really just need a sounding board and a framework for making decisions for what's ahead. We ask a lot about what symptoms people are having, what their goals are in terms of day-to-day function, what things they love doing, what matters to them most. “Palliative” means to shield, and it is our job to shield people from the stress of serious illness.

After we've had a chance to talk, we're then able to look ahead to where we want to go. What comes next is usually making sure we have the right documents in place. We have a notary public on our team, so we can notarize those documents. Our physicians can sign the physician orders for life-sustaining treatment, so that everything we've talked about in the plan is able to be carried forward, whether you're in a hospital, at home or in a facility.

We also connect with other members of the person’s care team to make sure that the plan and the person's goals are first and foremost the driver of any care that's going to be provided.

After the visit, we stay in touch to make sure things are working. We've increasingly been doing video-assisted visits, so that's often a help for people who have had trouble getting out of the house during this time. We’ve had the pleasure of talking to people while they are at home with family and snuggling their pets, which makes for a more relaxed experience.

Learn more about the extra layer of medical care and support Overlake’s Palliative Care team provides.