Every Story is Different

I recently spoke with Sarah, the Social Work Supervisor with Grace Hospice, to get her take on the role of a social worker at the end of life. As a doula and hospice volunteer, her comment “Every story is different” resonated with me. Every patient. Every family. Every journey. Every story.

As a hospice volunteer, I hear about the social worker visits – I see how they interact with the team, I read their notes in the journal, and I hear about their creative solutions when working with patients and families. But their work is more far-reaching than a note in a journal or a scheduled visit with the people they are serving.

As a vital player on the hospice team, the social worker walks alongside the patient and family without an agenda – they care for the patient, family, and entire support system. They are at the bedside to listen. And listen deeply without judgement. So many messages are heard in between the lines. I know well from my doula and volunteer work that listening is the best gift we can offer. Patients and families might come to hospice in denial about the seriousness and trajectory of their illness. The social worker will sit. They listen. They bring rapport. They keep an open mind. They empower the patient and family by supporting their goals for end of life.

One of the biggest roadblocks with the dying person and their family is understanding ‘comfort care’. By now (hospice admission), there has been a shift in their medical care. They no longer seek curative treatments. No more testing. No more doctor appointments for that terminal diagnosis. That can be difficult to comprehend. Years ago, I worked in a radiation therapy department at a large metro hospital. My patient sobbed at the end of her last treatment – she felt as long as she was ‘doing something’, she could fight off the inevitable. The inevitable comes. Let’s make this as comfortable as possible.

The postscript to everything….’then there was Covid’ is very real in hospice. The pandemic has demanded change in every part of our lives, including hospice care. Many social work visits have been done by phone or video. Families are thankful for the support, no matter how it looks. Creativity became part of the daily round.

I asked Sarah about self-care for social workers and her advice is appropriate for anyone who chooses to work with those at end of life. Social workers, and other helpers can often forget to care for themselves. Her advice is to establish personal and professional boundaries, like any other helping profession. Ask for help if you need it. Connect with your resources. Find an advocate. Schedule time to move. Get outdoors. Don’t forget to dedicate some time off to get away. Walking with patients and families at end of life is the most rewarding work I have ever done, or ever will do, but it will take its toll if I don’t look out for myself too. Taking care of ourselves shouldn’t be an afterthought.

March is Social Work Month. If you are fortunate enough to know a social worker, thank them for the creativity and resourcefulness they bring to every patient/client encounter. And if you don’t personally know a social worker, find one and get to know what they do. They work in hospices, schools, hospitals and clinics, private practice, prisons, military, and senior centers (I am sure I am missing something).

My heartfelt thanks to Sarah with Grace Hospice for assistance with this piece.

If you have questions about end of life care, please call me. Let’s talk about your intentions. The best time to make a plan is before you need one. Decisions made during a crisis are usually made with emotion. Let’s do this ahead of the crisis.

Published by susandoulamn

As an end of life doula, I walk alongside you during this sacred time, helping you create a peaceful space for your final journey.

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