Carly O'Brien

Carly O’Brien Photo courtesy of CancerCare

Discussing your loved one’s wishes for the end of life can be overwhelming, whether the person you are caring for has a good prognosis or is facing advanced cancer. Nevertheless, I’ve worked with many caregivers who report that knowing their loved one’s end-of-life wishes provides a sense of comfort and eases the burden of making decisions.

Here are some tips for advance care planning, a process that allows the person you are caring for to explore options and values and to decide on and communicate preferences for future health care.

Get information. Sit down with your loved one and the health care providers to discuss what the patient can expect over the course of the disease. Discussing how a disease typically progresses, especially if the person is no longer seeking treatment, can help you and your loved one have the same understanding of what might happen and can allow the patient to express his or her preferences for life-sustaining measures, such as intravenous feeding, hydration and mechanical ventilation.

Have a conversation. An open dialogue can help patients and caregivers feel more in control of their care. Most treatment centers have a social worker, nurse or chaplain who is trained to guide the discussion. If not, ask your oncologist or oncology nurse to provide recommendations for making the dialogue happen. The conversation should include an examination of the patient’s current health status, goals and beliefs. One way to begin is to download a starter kit from the Conversation Project, which offers questions to help patients examine personal values that guide end-of-life discussions.

Write it down. Creating an advance directive will go a long way toward making sure a patient’s wishes are followed. In most cases, an advance directive contains two elements: a living will, which specifies a patient’s medical treatment wishes, such as preferences for life-sustaining measures, and a durable power of attorney for health care, which allows the patient to choose a proxy tasked with making medical decisions in the event the patient is unable to do so. An advance directive can also include a patient’s preferences for spending his or her final days (for example, at home or in a nursing home or hospital), and funeral and burial plans.

A lawyer can help you and your loved one draft these documents, but legal counsel isn’t always necessary. Aging with Dignity provides an inexpensive, easy-to-use legal living will, called Five Wishes, that allows people to plan how they wish to be cared for if they become seriously ill. Still, patients and caregivers should check individual state laws governing advance directives. For example, some states require forms in addition to the Five Wishes document.

Get help for yourself. The grieving process begins well before the death of a loved one. Anticipatory grief involves feelings of loss over the future you envisioned with your loved one. You could feel a sense of loss for the person you once knew, whether related to physical or cognitive changes. Talk to a social worker, who can help you cope with your loss and sadness.

Carly O’Brien is a licensed clinical social worker and caregiver program coordinator.