*Don’t push hospice… and *The need of a spokesperson. (Hospice social work lessons 3 and 4 learned while witnessing my grandfather’s care.)

Among the many lessons I am learning about hospice social work while witnessing my grandfather’s care, there are two more that I would like to share:

Lesson #3: Choose a spokesperson.

Since my grandfather’s diagnosis, 5 different family members from out of town have been staying with him in shifts and a total of 7 family members have taking him to medical appointments at different times. Unfortunately, not all of these individuals were in agreement about his care, or fully mindful of his wishes.

The result was confusion and missed appointments, and then arguments among family members as they tried to reconcile what happened with what should have happened.

After my grandfather updated his paperwork to appoint his brother as power of attorney and one of his daughters as alternate, the conflict decreased significantly. Though POA doesn’t take effect while the patient is still competent, it makes a statement even beforehand about who the patient is trusting to represent his wishes. And it worked in this case. His other daughters stopped arguing about his care and instead went with the flow. And his stress level decreased.

Lesson #4: Don’t push hospice

Hospice is not for everyone who qualifies. It is for everyone who qualifies who wants it.

My grandfather would qualify with his diagnosis alone, and his age and comorbidities would make his acceptance into a hospice program a slam dunk. If he wanted it.

He doesn’t want it. And it’s not for not knowing about it. He has a daughter and a grandson who are both very passionate about hospice. And he remembers with a great deal of gratitude the hospice care his mother received in the months before she died. He doesn’t need education about hospice or any convincing that it’s a good thing when the time is right.

And he doesn’t want it. He wants to try a medication that has a potential to lengthen his life. And though some doctors, and his hospice RN daughter, think he should simply embrace comfort, he doesn’t want to. He’s a stoic man who was born in the Depression, who takes some pride in enduring. And as a patron of the arts and baseball lover who reads 2 newspapers a day and still has yet to meet the great granddaughter who was named after his mother, he has a lot to live for as long as he can still see, hear and think.

The point

I already knew all this stuff. Deep in my heart, patient advocacy is my priority as a social worker. Witnessing my grandfather’s needs has made this priority even more real for me.

As social workers, we can’t cut corners. Hospice social work requires a tenacious will to advocate for our patients. To be of value, this tenacity must endure even when emotionally erratic family members (or colleagues) create obstacles. We need to have the hard discussions, even if they create risk of us getting thrown out. We need to remember that hospice is a service for those who want it, and resist any temptations to become dogmatic about it as a Maslovian hammer.

I hope you’ve been able to gain something from these accounts. I acknowledge they are a little more personal than I usually get in these articles. Come back Monday next week for a change of pace as we go into opportunities in hospice social work to enrich patients’ lives with fun, art, music and nostalgia.

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