Sometimes the Best Answer is a Question

Helping Others Identify Their Journey

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Photo by Mantas Hesthaven on Unsplash

I met Jon shortly about a year and a half after is terminal cancer diagnosis. He had recently completed his fourth treatment and the outcome wasn’t great. Not only was it relatively ineffective, he felt awful while he was going through it. The doctor suggested the option of hospice because he was concerned that any remaining treatment options would be equally ineffective and would also make him feel terrible.

Within minutes of meeting Jon, I “knew” that going on hospice would likely be the best choice for him. He was under-supported in all the ways, and although hospice wouldn’t be a substitute for an in-home caregiver, they would provide some support in a lot of the needed ways – nurses and a doctor for pain management, a social worker for some of the logistical and emotional needs, a chaplain for spiritual needs and an aide a couple times a week to help with showers. They would also assess for and provide equipment that would make Jon’s life easier (hospital bed, a lift, commode, etc.).

“No way.”

This was Jon’s response when I asked him if he was going to get a hospice evaluation as his doctor suggested. In my earlier days as a death doula, I would react to this response with aggressive education, rattling off everything hospice would provide, how his quality of life would be better, and the statistic that people often live longer on hospice. And then, if that failed, the next time Jon and I would meet, I’d toss out some increasingly targeted facts, like how the hospice nurse handles everything at time of death (the death certificate, coordinating with the funeral director, etc..). Jon, like most of my clients would eventually end up on hospice, but maybe only utilizing the benefits for a few days before death. And that situation isn’t ideal. Hospice works best when there is more time to integrate all the support.

While I’ve learned that education can be helpful, I’ve also learned that there is something I can do that is even more effective. I can validate feelings and then ask thoughtful questions with the intent of gaining understanding.

“I hear you. The word “hospice” can be really scary. Is it scary for you to hear the doctor suggest hospice?”, I asked.

“Yes, a little. I feel like he’s giving up on me.”, he answered.

“I understand how it feels that way. Are you interested in more treatment?”, I asked.

“I don’t know. Maybe.”, he answered.

“I know you told me the negatives of more treatment – that you felt so sick the while you were going through it. What would be the positives of going through more treatment?”, I asked, even though I couldn’t readily think of any myself.

“I know I’ll feel awful if I do it. I know it’s just life-prolonging and not life-saving. I’m a smart person. I understand the situation. I just feel like I need to give it one more shot. I have a long history of letting go long before I should. If I do end up dying soon…well, I just want there to be one thing in my life that I can reflect on and say “I did my due diligence.”. I think I want to give treatment one more try.”, he said.

Plot twist…

“Ok. Thank you for being so vulnerable. This makes sense to me. Let’s call your doc and make an appointment to discuss next steps.”, I said.

If I would have just provided education, he would have likely skipped another round of treatment and picked the path of hospice. And there I would sit, feeling good about myself – knowing that his pain was being managed, an aide was helping him shower, the chaplain was addressing any spiritual needs and the social worker was supporting his mental health. But I would have missed the mark. Because although all these supports sound like an obvious choice to me, it is not my journey. My job as a death doula is to help others identify their journey and then walk beside them.

Jon’s journey included one more round of treatment.

This last treatment was scheduled to be administered over the course of five weeks. One week in, Jon decided to end treatment and go onto hospice. And he did so while being able to say “I did my due diligence.” – something he wanted to be able to do his whole life.

We are all on our own journeys.

It is so easy to make assumptions about others based on our own needs, wants, desires, and experiences. Asking questions provides gentle guidance for someone to identify their own path. And then we get to be in the beautiful role of “witness” and not just “educator”.