Say What Needs To Be Said

When I tell people that I volunteer at hospice, I get one of two replies:

  • I could never do that; or
  • It’s a good thing that you’re doing.

Most hospice patients are at home, so the majority of volunteers are working in the field. Of the 300 patients that might be on a current census, only 8-10 will be at the Care Center operated by the group.

My field work falls into the categories of respite, light housekeeping, day trips and errands. Volunteers also help with companionship, comfort touch, meal prep, massage and life review. The field work is usually easy – guidelines limit what a volunteer can do and we’re able to opt out at anytime.

As you’re working solo in the field, it can be a little lonely. The group recognizes that aspect and holds monthly volunteer connection meetings. I haven’t made it to any of these meetings. Being “alone” is a pleasure for me.

In addition to the field work, there’s a Care Center. Patients are admitted to the Care Center for family respite, to get medications sorted (usually pain/nausea/agitation) or, if they don’t want to die at home.

What surprised you? The biggest surprise is how little I’m working with dead people. Before I started, the team emphasized that a lot of living happens on hospice. They were right. 99% of my time is with living patients and I have the freedom to opt out of the 1%.

Are the dying in constant pain? At the bottom of my fear of death lies unknowable and uncontrollable pain. Working at the acute end of hospice care, I was surprised that there wasn’t more suffering. To be clear, I have seen true suffering but it is less than 5% of all patient interactions. Young people dying of cancer and patients dying after being on a feeding tube have been the most emotionally challenging.

Isn’t hospice about giving up? I sense that many families see hospice care as pushing a person towards death. With my grandmother, most of our family (myself included) wasn’t willing to consider hospice (so Nana died at a palliative care ward). Watching the team, what’s emphasized is:

  • Optimizing the time that remains
  • Putting the patient and family in control
  • Ensuring dignity & comfort.

As well, there is a strong network within the grief services team to help the survivors continue living.

Don’t postpone joy. I’ve shared laughter with people that are close to death. This has been a valuable lesson for my unnecessary attachment to being “miserable.” Always stay open to happiness.

Every generation needs a caregiver. Volunteering at a care center is free training in an environment that can be “scary.” It’s only taken three months for my boundaries to be reset. As a parent, there is (now) nothing that my kids can produce that will freak me out. My sick kids, and their diapers, have been put into a better perspective.

Tips to conquer fear. The group does an excellent job managing their volunteers. I noticed:

  • Everything is optional
  • Responsibility for outcome is removed – that lies with the professional team
  • Acceptance of mistakes – I don’t always say the right thing but that’s OK
  • However, clear boundaries are established to prevent serious mistakes (no medical care, no feeding, no giving of medicines).
  • The above show me the difference I can make by helping with “small” things. Listening to a spouse, taking out the trash, sorting laundry, refilling inventory… I’ve experienced deep gratitude from little acts of kindness.

If you feel the calling then follow it. There’s tremendous value to you and your community.

Within the constraint of “do no harm,” say what needs to be said.


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