Meet Jennifer O'Brien, Author of The Hospice Doctor's Widow

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Meet Jennifer O'Brien, Author of The Hospice Doctor's Widow

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Was there a sense of deja vu for you and Bob's conversations from work and when he was diagnosed?

There were certainly several concepts such as Precious Time and the personalization of end-of-life preferences that he applied in his practice to guide patients and families. When he was diagnosed, we realized we were having to turn that guidance and wisdom on ourselves, yes. So many concepts and practices that he had imparted on patients and their families that were now applicable to us. Perhaps déjà vu with a painful twist.

I can also remember feeling sad when people would say, “You are in our thoughts and prayers.” I liked it when Bob was the healthy physician and others were in our thoughts and prayers. I did not want to need to be in people’s thoughts and prayers. Later in the process, I found myself just thinking and saying thank you. We did need peoples’ thoughts and prayers.

How did your relationship with your husband change as you began to assume the caregiver role for him, as opposed to him caring for others?

Well, he continued to care for others for about a year and a half after his diagnosis. There was nothing more important to Bob than his work and I was committed to supporting him in working, as long as he possibly could.

That is not to say our relationship did not change following his diagnosis. Like most caregivers, I had to balance caring for an adult, staying on top of everything, making sure he did not end up too tired, too hungry, or unnecessarily suffering while not babying him. Unless, of course, he wanted to be coddled on a particular day or in a moment. Gauging when he wanted to be taken care of and when he did not want to be babied was not always easy. I think I learned to pause and let him indicate more of what he needed or wanted. Of course, there were many times when I just missed it altogether.

There’s a thing that happens sometimes with many adults who get cancer, they become, understandably, extraordinarily focused on themselves. I say understandably because it really is. There is an emotional, physical, mental, and spiritual largess to the cancer diagnosis, and I think it becomes all-consuming. The family caregiver ends up in a supportive role that is absolutely essential yet invisible and under-appreciated. This is probably the case with other diagnoses also, I just mainly have experience with cancer.

How did you maintain boundaries as both a caregiver and wife?   

Where to begin… issues of boundaries for family caregivers are many and fluid. There are the subtle boundary issues mentioned above – does the care recipient when to be coddled or exercise their independence. There is the fact that we, as caregivers, get a feel for what works and doesn’t work for the recipient, but that doesn’t make us healthcare professionals. There is pushing through a crisis like a trip to the ER and then downshifting into savoring precious, restful moments. There is the line between giving everything you have to care for someone knowing full well they will die, and you will transition from caregiver to griever. There is a balance between hoping and preparing. Bob and I did a lot of preparing for his death and my survivorship. I believe that was one of the most intimate and loving parts of our story. It certainly made my transition from caregiver to griever easier. Not necessarily less sad but less tumultuous, confusing, or traumatic.

What advice do you have for individuals who are skeptical—or scared—to use hospice or palliative care services? Do people respond better to a more professional or personal (your own stories, etc.) approach?

Understand what Palliative Care is… it is an interdisciplinary team approach to a serious diagnosis. It is a bunch of extra help because the team includes a physician, advanced practice nurse, social worker, chaplain, and often clinical pharmacist all thoroughly trained and experienced in how a life-limiting diagnosis impacts the individual, their life, and their family.

Palliative care itself does not mean anyone is dying. There are many of Bob’s palliative care patients who have long outlived him. Often people get the help that they need from palliative care and don’t need any more extra help for a long time, perhaps ever. There are also times when the patient has a complication or side effect; a medication is no longer effective, or there are no more treatment options for their primary illness, and they return to palliative care for additional help and guidance.

Palliative care is not the same as hospice. Sadly, many people (even healthcare professionals) don’t realize that and so patients and families miss out on the additional help. Palliative care is a complimentary service to other specialties. The palliative care team works with the oncologist, neurologist or whomever your primary specialist is.

When asked, most people envision a good death as peaceful, comfortable, and free of suffering at home. As with any major life event, there are conversations, planning and practical measures between envisioning that peaceful death and achieving it. A peaceful death free of suffering doesn’t just happen. A hospice organization helps with those plans and practical measures. 

It comes back to what I call the Triad of Certainty

  1. At the end of life comes death. 
  2. There are no do-overs at the end of life. 
  3. Changed forever, the loved ones remain and remember.

Death will happen. By discussing end-of-life wishes, preparing, and accepting we can avoid unnecessary consternation and trauma. These conversations need to happen when everyone is well, periodically throughout an illness and then when death is imminent, hospice can help with the specific equipment, guidance, and measures necessary.

How did writing The Hospice Doctor's Widow affect your grieving process?

I didn’t write The Hospice Doctor’s Widow: A Journal after Bob died. In fact, it was not created with the intention of ever becoming a book. I started keeping an art journal when Bob was diagnosed with stage IV cancer. I documented my thoughts and feelings, our experiences just as a form of self-care. I continued art journaling for the 22 months he lived, and then for about 1.5 years after his death. 

At that point, I shared my art journal with a neurologist who was in the process of diagnosing three patients with ALS. The neurologist told me I needed to get the journal published as a book because it was so helpful in closing the gap between what the specialist is able to provide for the patient and what the family caregiver needs. 

I think it was all the insights that Bob and I had from his work as a palliative care physician and my previous personal experience as a family caregiver and with deaths in my family that made it so helpful.  Anyway, the idea that my little art journal could actually help others was compelling so I went to work on finding a publisher that would take a chance on it.

The book has been out for about a year and a half now. It has won four awards and helped countless people. I am so grateful that I showed it to that neurologist and, of course, that he received it so positively. Recently, I have realized that publishing my private art journal about taking care of my husband as he died has had an impact on my grieving process – I am just beginning to discover what that impact entails.

What impact did the support of colleagues and friends have on your life during and after Bob's passing?

This is a great question, thank you for asking it. The quick answer is not a lot. Bob was committed to maintaining his privacy during his illness and death and I was committed to supporting those wishes.

He did not want to be cared for by the same physicians he had trained and his own program director. Our palliative care was definitely do-it-yourself (DIY). This is how I know the value of consulting a palliative care team early and often – we did not have that. It was fine for Bob, he knew what he was doing and it was his choice. 

Palliative care is one of the few specialties that recognizes and spends time on the role of the family caregiver(s), so I was the one who suffered most from Bob’s preference for DIY palliative care. Kind of like the cobbler’s kids are the last to get shoes. Having said that, I take great comfort and pride in the fact that I supported what he wanted.

I also know from this experience that while DIY palliative care was possible (although not recommended), DIY hospice is impossible. Because of Bob’s desire for privacy and thinking perhaps we could just do it ourselves, he did not admit himself to a hospice status until I helped him to realize that not being in hospice status did not support his stated desire for minimal intervention at the end of his life. 

As we discussed in question three, a peaceful death free of suffering doesn’t just happen, we need support. A peaceful death free of suffering is absolutely essential to the future well-being of the caregiver turned griever, we cannot leave that to chance. 

More from Jennifer O'Brien

The Weight of "Should" on a Caregiver

The Hospice Doctor's Widow Website

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