Advance Care Planning Advice for Family Caregivers

Dr. Allison Applebaum, MSK clinical psychologist and author of "Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving."

Clinical psychologist Dr. Allison Applebaum shares tips and strategies about caregiving for loved ones with cancer in her new book, ‘Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving.’ “Most of us don’t choose suffering," she says, "but we do have control over how we choose to respond to situations we’re in.”

Few people understand the enormous challenges family caregivers of loved ones with cancer face better than clinical psychologist Allison Applebaum, PhD. She founded the Caregivers Clinic at Memorial Sloan Kettering Cancer Center (MSK) in 2011, the nation’s first-of-its-kind clinic. It helps people care for loved ones while managing their own emotions and life responsibilities. Dr. Applebaum says every caregiving parent, partner, child, sibling, or friend who is distressed sitting in MSK’s waiting rooms shares a common experience with most of the 53 million unpaid, untrained family caregivers in the United States. “We rarely choose to step into the caregiving role,” she says. “For most of us, it’s given to us.”

What Is Advance Care Planning?

For MSK family caregivers, one of the major stresses is advance care planning — the process of talking about and documenting goals for future healthcare. Dr. Applebaum encourages families to lean into these discussions with their loved ones. “These are conversations that should happen long in advance of caregivers having to make decisions on a patient’s behalf,” she advises. And she helps caregivers guide these difficult, but important, conversations, teaching them evidence-based communication tools and techniques developed at MSK. Now, she’s making those practical tips and takeaways from the Caregivers Clinic available to everyone in her new book, Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving.

The book features additional insights from her own experience as a family caregiver for her father, famed musician Stanley Applebaum, at the end of his life. Even an expert can’t avoid the emotional ups and downs, she says, but caregiving brings new opportunities to connect to what’s meaningful in life.

Book cover: Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving.

The takeaways in Dr. Applebaum’s book are drawn from the Caregivers Clinic she founded, along with her experience as a family caregiver for her father.

“Most of us don’t choose suffering, but we do have control over how we choose to respond to situations we’re in,” she says. It’s a lesson in courage she applies to advance care planning. In addition to helping a loved one, having the courage to start difficult conversations greatly benefits caregivers. It lessens anxiety and guilt, and has been shown to have a positive impact on caregivers’ emotional health.

Here, Dr. Applebaum shares tips and strategies to help family caregivers guide these important conversations.

What are the benefits of advance care planning?

“Advance care planning” is an umbrella term for the process of thinking ahead to goals of care, the choices to be made about treatment, and selecting a healthcare proxy to speak for a patient at a point in the future.

The benefit of advance care planning for a patient with cancer is that it helps to ensure they receive the medical care they want in the future. For example, should the cancer be treated as long as possible? What about quality of life? These are tough conversations, but they bring peace of mind.

The benefit for the caregiver is a shared understanding of the patient’s goals of care and confidence in carrying forward those goals down the line. Advance care planning discussions should be open, honest, and repeated. They give caregivers the opportunity to process information clarify and check their understanding, and feel confident in their decision-making. This is why these conversations are so important.

What are goals of care?

“Goals of care” include the goals patients have for the care they are currently receiving and the care they want to receive in the future. These goals encompass what patients value in terms of their desire to receive care that can save or extend their lives, as well as care that is focused on preserving their quality of life, however long that may be. Goals of care inform treatment choices at every phase of illness — current, near future, and long term. Since goals change over time, these are conversations that will need to be repeated.

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Is having a healthcare proxy enough?

There’s an assumption that advance care planning is accomplished if the patient has signed a Health Care Proxy form, which names a person to make healthcare decisions if the patient isn’t able to communicate. But that form is just one small piece of the puzzle.

There are multiple advance directives to be completed, which are legal documents that outline the patient’s goals of care, and how, ideally, they’d like them to be carried out. Common documents include:

  • A Living Will
  • A Health Care Proxy form
  • A Do Not Resuscitate (DNR) order
  • A Do Not Intubate (DNI) order
  • Physician Orders for Life-Sustaining Treatment (POLST)/Medical Orders for Life-Sustaining Treatment (MOLST)
  • A Medical or Healthcare Power of Attorney (POA)

These forms reflect patients’ goals of care. They can and should be updated when patients’ goals of care change.

What’s the right time to talk about advance care planning?

It’s never too early. A misconception is that it might be premature to have these conversations soon after a patient has received an initial diagnosis. While it may not be the right time to discuss end-of-life care options, it’s never too early to discuss goals of care more broadly, and what the patient’s values are in terms of the care they receive. Many families expect doctors to initiate these conversations, but even healthcare professionals often avoid frank discussions or delay them until it’s too late. Everyone involved — patients, caregivers, and healthcare professionals — finds these conversations difficult, which is why I encourage family caregivers to take the lead.

Are these conversations too stressful for a patient?

Many caregivers fear that advance care planning conversations will cause their loved one extraordinary distress that could negatively impact their recovery. In fact, many caregivers share that they avoid these discussions — and avoid discussing their feelings about illness in general — for this reason. As a result, many caregivers and patients get stuck in what we call a “network of silence,” in which they both avoid sharing their concerns, which very often are aligned. This prevents a caregiver from discussing what’s most important and from disclosing worries. The irony is that rather than being comforting, the avoidance adds to isolation, alienation, and fear in both caregivers and patients. At MSK, we’ve developed and tested strategies that caregivers can use to guide conversations with loved ones and members of the healthcare team about advance care planning, many of which we teach to caregivers who seek support in the Caregivers Clinic.

How do I start the conversation?

Discussions about advance care planning are not easy to have, even for the most seasoned conversationalists.

Two communication strategies that caregivers have found particularly helpful especially when navigating the role as healthcare proxy are agenda setting and the consent conversation:

  • Agenda Setting: Agenda setting is a strategy to help caregivers start difficult conversations, such as those regarding goals of care. It involves caregivers stating what it is they want to discuss with their care partner (“I would really like for us to talk about…”). It also involves providing a rationale for the conversation (“It’s important I understand what type of care you want.”). Finally, it involves asking their care partners if there’s anything they’d like to add to the agenda.
  • The Consent Conversation: To maximize time with healthcare professionals, the consent conversation helps patients and caregivers get on the same page. Many caregivers want to ask certain questions of the medical team but are afraid of upsetting the patient. Rather than holding back — perpetuating the network of silence — I encourage caregivers to begin a consent conversation before the next doctor’s visit. This means letting their loved know what they want to speak about with the healthcare team and checking in to see if they’re OK discussing this topic. If the patient is not comfortable, a good response is: “It’s fine if you don’t want to discuss this at the next visit. Would it be OK if I ask again in a few months?”

What if my loved one isn’t ready to have the conversation?

It’s normal for patients to share that they aren’t ready to engage in advance care planning discussions. It can be helpful to keep a running list of questions and topics that you want to discuss so you can have them handy whenever your loved one is willing to engage. It can also be helpful to pick a time when you both can give the conversation your full attention, and to plan something nice to do together after!

While it may not feel like much changes after opening these conversations, it takes a lot of courage to have them, and the payoff for you is significant. You’ll likely feel less anxiety and worry in the short term, and if you are tasked with bringing your loved one’s voice into the room in the future, you’ll be able to do so confidently.