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Advance care planning: The importance of expressing your medical wishes

Saturday, April 25, 2020

This article first appeared on Scope

By Ruthann Richter

The coronavirus pandemic has made us all painfully aware of our mortality. Still, in this time of uncertainty, there are some choices we can make about how we live – and die. 

Advance health care planning enables people to reflect on what is important to them and what kind of interventions they would want if they become critically ill, says Grant Smith, MD, a clinical assistant professor of medicine at Stanford Medicine. Smith is an expert in palliative care, which focuses on helping relieve symptoms and  improve quality of life for patients with serious illness. 

He talked with me about how advance health care planning can make a difference for people.

What is advance health care planning, and why is it so important?

It’s about making decisions about the health care you’d want to receive if you become seriously ill and were unable to speak for yourself. First, it’s about your own planning, thinking about what kind of care you would want. The second part is to consider what would happen if you couldn’t speak for yourself. We recommend that people designate a person who could step in to make decisions for them if they are unable to communicate.

How has coronavirus changed advance health care planning?

The main thing the coronavirus has done is bring the issue to the forefront. The actual steps, questions and the conversations we need to be having with our loved ones are very similar to the ones we should be having outside the pandemic. 

Is this kind of planning just for older adults?

Young people should think about this, too. I’m young — 34. I don’t have an underlying condition, but I’ve completed a plan for myself. No one is guaranteed good health indefinitely. Whether it’s through an accident or an infection, the possibility of having a sudden serious illness exists. And for me, having a plan in place helps me feel more comfortable and less anxious about that possibility.

What are the key things for people to consider and to discuss with family members and caregivers?

The first thing to think about is your current health status. How is my health? Do I have underlying conditions? Do I have a condition that could be life-limiting? 

Second, given your health status, think about what is most important to you. What makes life worth living? For example, for myself, the thing I couldn’t live without is to recognize and meaningfully interact with my friends and family. If I were to get seriously ill, I would want to do everything possible to get me back to being able to do this. If it became clear I wouldn’t get back this, I wouldn’t want my doctors or family to artificially prolong my life.

The next step is to designate a surrogate decision maker who could step in to make decisions if you couldn’t. Then, you should complete an advance directive, which is a written document about your goals or priorities, the things that are important to you and the medical interventions you would or would not be willing to receive if you were seriously ill.

Surveys have shown that as many as 90% of people believe talking to loved ones about end-of-life wishes is important, but less than one third actually have done it. Why?

It can be difficult and scary to think about a time when we are very sick or at the end of our lives. It’s normal to feel uncomfortable with that. Both for myself and my patients, I try to think of it as something that is empowering and comforting, knowing that family members would have guidance to make decisions and that it wouldn’t all be on their shoulders.

I often tell family members that the advance directive is sort of a gift that they give to their family members. Then their family members, in honoring that, have a gift that they give back to their loved ones. Everyone on our team has seen the difficulties when we don’t have clear guidance – when families are struggling and going through angst or suffering because they haven’t talked about this with their loved ones. We also have seen the opposite – when a sad or difficult situation is made easier, with less emotional suffering, when family members feel they have guidance.

What resources are available to help people in this process?

Your primary care doctor, who knows you best, is a great resource. Stanford’s palliative care website also has great resources for patients and families, including information on palliative care and COVID-19.

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