In the previous post, we talked about the importance of facilitating enjoyment and meaning beyond basic needs. The prerequisite to facilitating enrichment, and any other actions in hospice is knowing what the patient wants.
Unfortunately, the above statement in bold is sometimes under-emphasized. Hospice workers can forget that in hospice, it’s all optional. The social worker’s visits are optional. Spiritual care is optional. Home health aides are optional. The only participation that agencies require of patients is that they consistently let a registered nurse in the door. But since receiving hospice care itself is optional, even nursing visits are optional.
Social workers are special because we prioritize the patient’s desires when everyone else is taking actions based on habits and norms. Norms are limiting. Patient self-determination means we care about their norms more than what society is currently preaching as appropriate. And it means we’re willing to violate norms–within ethical constraints–when doing so facilitates a patient’s desires.
We base our interventions on what patients and family members want, especially when it comes to activities that go beyond basic needs into the realm of psychosocial enrichment. Here are some ways to assist them in telling us what their wishes are:
1. Describe some wishes you’ve helped grant for other patients.
Once I was chatting with the wife of a patient about the Dream Foundation and the kinds of things they’ve helped patients get or experience. She didn’t know right off the bat what she or her husband might want for them, but fortunately her visiting sister knew. She calmly and matter-of-factly walked over to where we were sitting and placed in front of me a brochure from a resort. I asked the spouse: “Do you want to go there?” She responded: “We would love to!”
I helped them complete an application for the Dream Foundation, and within a couple weeks, I received a postcard from the resort from her, thanking me for making it possible.
2. Ask them what they would ask for, if they could ask for anything
A quality assurance nurse once spoke with our team before an IDT about the importance of being willing to think outside of the box for the sake of honoring wishes. She gave the example of a patient who wished he could be at his granddaughter’s wedding. She thanked him for the willingness to express such a dear hope, one he was very sad would not likely come into fruition, since his granddaughter was still a child.
The quality assurance nurse then delivered her thesis statement: when we can’t give patients exactly what they hope for, we can serve them well by helping them experience something similar.
Another way of expressing this sentiment: Patients’ hopes for unlikely things can inform us about what likely things they might find meaningful.
Once when I asked a patient what she would ask for if she could ask for anything, she told me she’d ask for Elvis to come back to life. I offered to find an Elvis impersonator to come and perform for her, and she said she would love that.
3. Listen for wishes to emerge as the relationship develops
I was once very inclined to inform patients about Swan Songs and the Dream Foundation during our first meeting. I thought a great way to get started on the right foot with a new patient would be to get them excited about some diverting experiences that could be coming their way. Over time, I noticed that patients were much less likely to express enthusiasm about these kinds of projects when I brought them up as part of a prescribed checklist, but more interested when the topic came up organically throughout our interactions.
It makes sense. Even if the thing you’re selling is totally delightful, start of care is an overwhelming time, even without someone coming in and offering to start planning a party for them. And if the wish they have represents a sincere and vulnerable need, they are more likely to let you in on it once you’ve grown on them.
Now that we’ve done some thinking about how to learn what patients want, we’ll talk when we next return about the kinds of things and activities that can be obtained through community organizations such as the Dream Foundation.