Planning for End-of-Life Care

As a frequent contributor to this blog, I can write pieces fairly quickly, but I have a confession: I’ve been avoiding this one. The truth is that even though most of us know we should be talking about end-of-life care, almost two-thirds of adults are avoiding the topic.

It’s easy to understand why. My family is still reeling from the loss of two loved ones late last year, and my grief still feels tender. As we grow older, we become more aware that our friends and loved ones are facing their mortality in new ways. But planning for end-of-life care doesn’t have to be frightening or stressful. Making plans for your own and your loved ones’ care can be an empowering act of advocacy and a deep comfort in times of sadness.

The Benefits of Planning Ahead

According to The Conversation Project, a U.S.-based nonprofit organization that supports individuals and families in starting conversations about end-of-life care, 95 percent of Americans say that they would be willing to talk about their wishes for end-of-life care, but only 32 percent have had such a conversation. The CDC reports that in many cases, patients avoid these discussions because they don’t understand the importance of advance health care directives, they’re confused about what impacts planning would have on their care, or they don’t want to upset their families. Caregivers and health care providers can help foster positive communication about end-of-life care.

Planning for end-of-life care is the best way to make sure that if your loved ones are incapacitated, caregivers and medical providers will know how they’d like to be cared for.

Taking the Leap

Experts say that it’s helpful to start conversations about end-of-life planning with open-ended questions. If your loved one is already ill, you might ask, “How are you feeling about your treatment?” If they are lucky enough to be without major health issues, you might ask, “How do you think your life might change over the next several years?”

Choose a quiet time and be willing to return to the conversation as many times as you need to. If your loved one is ready to talk about end-of-life care and advance health care directives, they may share many thoughts with you. It’s okay to ask them to slow down or return to the conversation later if you feel overwhelmed. If they are not fully ready to talk about it, you may need to give them some space and gently introduce the conversation again later.

If you are uncertain about how to start the conversation, consider asking a trusted health care provider for tips, and enlist other family members for advice and support. There are many online resources designed to help you broach the topic of end-of-life planning with your loved ones, too. Sometimes, reading the stories of others who share your experiences can help you feel ready.

What to Consider

When planning for end-of-life care, you should try to cover both logistical and administrative issues as well as larger values. Some examples of things to discuss are:

• Quality of life: What constitutes quality of life for your loved one? How and where do they hope to spend their last days? What values do they want their caregivers and providers to understand?
• Medical interventions: What treatments are they open to? What treatments would they like to avoid? Would they be willing to be on a ventilator, or to receive nutrition and hydration from a feeding tube? Would they want to be resuscitated if their heart stopped, or they stopped breathing?
• Health care proxies: Who should make decisions for them if they are unable to make decisions themselves? Would they want their health care decision-makers to follow their instructions to the letter about end-of-life care, or should they use their best judgement as new information becomes available? Speak with a lawyer to understand whether a medical power of attorney is advisable. Independence Blue Cross has a personal representative request form available, which identifies a person who has legal authority to act on a member’s behalf in making decisions related to the member’s health care.
• Financial proxies: Where are their important papers? What bills will need to be paid? What would they like done with their assets? Who should make financial decisions? A lawyer can help you understand whether a financial power of attorney should be executed and can help with drafting a last will and testament.
• Advance health care directives (sometimes also called “living wills”): What concrete requests do they want to make about end-of life-care? Do they want to formally put a “do not resuscitate” (DNR) order in place? Each state has a different form for advance directives, and they must be signed and witnessed to be legally binding.
• Funeral planning: How would they like to be memorialized? Do they want to be cremated or buried? Where would they choose to have their final resting place?

Education and open communication are the keys to ensuring that patients’ wishes are honored during their final illnesses. I urge you to start the conversation about end-of-life planning today and return to it often. In fact, I will if you will — it’s time we all started talking about this tough topic.