Supporting Patients with Advance Care Planning During Cancer Treatment

A cancer diagnosis often initiates a variety of healthcare processes: testing, staging, invasive procedures, treatment plans, pre-authorizations, referrals to additional specialists, and more.

The provider making the initial diagnosis has an important role along the cancer care continuum — even when the patient moves onward to other parts of the health system. As a trusted point of contact, this provider has the opportunity to remain connected to the patient and influence a key process that's frequently overlooked: advance care planning.

It's an important consideration for any patient, but especially so for cancer patients. And it usually doesn't come up until the patient is asked — typically, right before a surgical procedure — “Do you have a living will?"

According to a Health Affairs study on advance directives, only 38% of patients with chronic illnesses like cancer had completed advance directives.

Here are three easy ways to support cancer patients in advance care planning:

1. Include the Caregiver in Cancer Treatment Conversations

A cancer diagnosis doesn't just change the patient's life. Life has also changed for primary caregivers — be it a partner, parent, relative, or friend.

When advocating for advance care planning, conversations should include this primary caregiver as a best practice, as outcomes for the patient can depend heavily on the person in the primary caregiving role.

According to a 2020 study published in BMC Palliative Care, disease-based cognitive impairment prevents a considerable number of patients from expressing their wishes when end-of-life care is required. In these cases, caregivers may be called upon to make decisions on behalf of their loved ones.

Caregivers are also valuable partners for providers, and establishing good communication early on may improve care delivery throughout the cancer experience.

2. Make it Part of the Cancer Treatment Plan, Especially When Things are Going Well

Advance care planning is not just for late-stage cancer patients. Even if the prognosis for a patient's particular type or stage of cancer is good, the measures required to achieve that outcome — surgery, radiation treatments, chemotherapy, immunotherapy, or some combination of the above — often carry a high level of risk.

Having a clear advance directive in place throughout the recommended course of cancer treatment certainly affords peace of mind for patients and their families. But it also promotes positive patient outcomes. Too often, these conversations occur only at times of crisis, when patients and caregivers are in “fight” mode due to situational stress. Advanced care preferences elicited during times of relative calm and stability are more likely to reflect the patient’s baseline preferences and often more effectively increase alignment between patient, caregivers, and providers during critical decision making events.

According to the aforementioned study from BMC Palliative Care, there is evidence that "ACP-interventions can improve patient-related outcomes such as patient satisfaction with care, alignment between actual care and patients´ goals, quality of communication, and shared decision-making."

3. Offer Resources to Navigate the Cancer Treatment Process

Besides the emotional impact of end-of-life discussions, the intimidating legal jargon associated with advance directives is another factor that causes patients to hesitate in completing the necessary paperwork.

To combat this challenge, a number of organizations created easy-to-access solutions that are worth recommending to patients and their caregivers:

• The Conversation Project: This site includes conversation starters and guides on topics like choosing a healthcare proxy — all in a format and language the patient and their family can understand.
• Planning My Way: This free planning tool was developed by the spouse of a metastatic breast cancer patient, who was provided with palliative care at the end of her life. The tool serves to empower loved ones and reduce their burden by clearly communicating the patient's wishes — ideally reducing the risk of communication conflicts between family members and healthcare providers.
• Death with Dignity: Tools for (digitally) completing legal documents, such as MyDirectives and Everplans, are among the valuable resources shared by this clearinghouse for advance care planning.
• The American Cancer Society's resource hub on advance directives provides a helpful springboard to cancer-specific advance care planning tools and platforms.

When a healthcare crisis occurs, there's usually little time for discussions about end-of-life preferences. Partnering with cancer patients to support advance care planning early on during times of relative calm ensures quality care along the continuum of treatment. It also empowers patients to take more active decision control amidst the many unknowns of a cancer experience.