Holidays are ideal time to have ‘that talk’ with loved ones

“I’m afraid of being in pain.”

That was the one fear my mom, Nancy McBride, repeatedly expressed throughout her three-year battle with cancer. And that fear is why she finally decided to start hospice care.

As with so many other families whose loved ones face terminal illness, we wish Mom had begun palliative and hospice care much sooner. But none of my mom’s physicians — except one, her general practitioner — mentioned hospice, let alone encouraged us to consider it as an alternative to continuing treatment.

Instead, my mom, in the final months of living with bile duct cancer, was offered another round of chemotherapy. After just a few weeks, treatment was halted in June after Mom was hospitalized with exhaustion, having lost so much weight and energy that she could hardly sit up or eat.

A few months later, she was hospitalized again because the chronic pain she had learned to live with was getting worse. That same month, Mom got a call from the oncologist’s office wondering if she wanted to resume treatment. Again, there was no talk of hospice until a chaplain stopped by Mom’s hospital room.

Once hospice began, we were able to better manage her pain at home. In the nine weeks before she died, she had discomfort, but the pain was kept largely under control. A nurse regularly visited to check her vitals, make sure she had the medications she needed and show us how to keep her comfortable. A music therapist visited, something my dad especially enjoyed, and a social worker kept in touch to see what any of us needed, even after Mom died.

Training doctors, educating families

Since her death last month, I’ve talked to many people about their loved ones’ final months, and nearly all described wanting what my mom experienced at the very end: To be at home with family and in as little pain as possible.

Unfortunately, for many people that’s not what happens. This doesn’t surprise Edo Banach, president and CEO of the National Hospice and Palliative Care Organization.

Banach notes physicians receive little to no training in having end-of-life discussions, so he advises patients and their caregivers to take the initiative. “We have to train consumers to ask for it, and we have to train doctors to offer it,” he says.

Only half of Medicare patients who died in 2019 were receiving hospice care at the time of their death, and the median length of their stay in hospice was just 18 days, according to an annual report Banach’s group published in October.

One medical study found that in just 5% of meetings with cancer patients did oncologists discuss end-of-life options. The doctors “responded inadequately to patient concerns about disease progression or dying, used optimistic future talk to address patient concerns or expressed concern over treatment discontinuation,” according to the study published by JAMA.

The researchers noted most end-of-life discussions occur only one month before death. Not talking about a patient’s goals for the end of their life hurts the patient, their loved ones, the health care system — and “represents a major public health problem.”

Hospice providers like Bourbonnais-based Uplifted Care frequently get referrals “very, very late in the process … (when) it’s crisis management” because the terminally ill patient is suffering, and family members are upset and don’t know what to do, says executive director Connie Lemon.

The holidays are an excellent time to discuss what each family member wants at the end of their life, Lemon says. It’s easy to find information on the internet about how to complete an advanced directive and choose a health power of attorney, she says. And palliative and hospice care should be part of that conversation.

The reality is all of us will die, but there are steps we can take now to increase the likelihood of getting compassionate care that improves our quality of life. Don’t wait for your doctor to suggest palliative or hospice care, like my family did, because most of them won’t. We have more power than we may realize to decide how we want to live our final days, weeks and months. Having those conversations now could make all the difference in the end.

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