A difficult journey

Hospice helps navigate end of life

Patient preferences and wishes seem to be secondary in much of health care these days, but not so in hospice.

When I started as a hospice social worker two decades ago, I was drawn to the opportunity to connect with a patient, walk with them through challenges, and coordinate with others to support their endof-life journey. These challenges are unique for every patient, just as every person’s life experience is unique. What sets hospice care apart is our commitment to honoring and accommodating a patient’s personalized needs and wishes. Sometimes this means a solution doesn’t end up looking the way you thought it would.

I remember a woman I cared for many years ago. Fiercely independent, estranged from family and relatively young at only 50, she knew the cancer that had reached her brain would lead to her death. She wanted to do as much as she could on her own, only asking for help when she badly needed it and preferring only the company of her two beloved dogs. Speaking with her, it became clear that she wanted to focus on taking care of herself. Though she was estranged from her family, she didn’t have the energy to pursue repairing strained relationships, even if reconciliation was possible. Daily care for her and her pets was her priority—how does one tie up life’s loose ends when staying alive takes everything out of you?

While every situation and the care provided is unique in hospice, the process of preparing for death can initially be almost universally painful and overwhelming. Hospice care started in the United States in the 1970s and for more than 40 years has been helping those facing death navigate their journey. Here in Arkansas, nearly 50 percent of Medicare patients who are dying take advantage of the Medicare Hospice Benefit. For those who choose hospice care, a social worker can help ease the burden for beneficiaries as they weigh priorities, make tough decisions, and work through their challenges to find peace.

Hospice social workers make sure our patients have the resources they need to function, empowering them to live out their final days where and how they choose. Social workers advocate for patients and their families. Social workers are there to work through the grief and emotions of death and dying. They even build bridges among family members when appropriate. The job of the hospice social worker—their purpose—is to care for the whole person, not just their disease, and to facilitate the patient’s end-oflife journey, whatever that journey might be.

My patient with terminal brain cancer was comfortable walking her journey alone—that was all she could handle by herself. As her social worker, however, I saw an opportunity to help her with the frayed family relationships she no longer had the stamina to attempt to repair. After speaking with her about her children, she granted me permission to reach out to them with news of her illness. After a month of conversations between her son and me, the two of them finally felt ready to speak on the phone.

Although she died shortly later, alone with her pets as she had wanted from the beginning, she was no longer burdened with the regret of not reaching out to her children before she died.

Her wishes were different from what I wanted for her, but my wants were not what mattered. Her care was about her wants, desires, and wishes. That’s what makes hospice care unique. Hospice care is true coordinated care that helps Americans and their families traverse some of the most difficult and painful situations imaginable on their terms. It’s a team of skilled professionals that allows patients to call the shots and direct their own care, something rarely seen in our health system, in a way that does not just meet but honors their unique wishes and needs. Hospice is a program that works and a Medicare benefit that matters and must be preserved for individuals and families here in Arkansas and across the nation.

The process of preparing for death is rarely easy, and an arduous journey to navigate entirely alone. For hospice caregivers, particularly hospice social workers, it’s a journey we’re proud to take with our patients—even when the journey doesn’t look the way we initially thought it would.