Not All of Us Are Bad At Death

Recently we have seen some of our favorite topics in prominent journalism and television series: caregiving daughtersend of life care, and death and dying. We took notice and have been thinking about them ever since. The articles have us contemplating how we can make dying better and how caregiving daughters can thrive as part of the American health care force. We have previously talked about why our employers should pay attention to us, strong and successful women who also make kick ass caregivers. But when our loved ones are dying, will medical professionals be able to help us attain a “good death”? These issues pull at our heart strings, because we want caregivers to be supported, especially when faced with orchestrating end of life care.

Photo credit: Melissa Kroll Photography   www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography  www.melissakrollphotography.com

The recent NY Times article, "We're Bad At Death. Can We Talk?" by Dhruv Khullar suggests that we continue to struggle with the right time to enter into end of life care mode. We agree, as we’ve previously written, it can be full of worry to find the right time to enroll in hospice, not to mention figuring out how to talk about it. It is a bleak reality that there are patients dying who have frequent medical visits, procedures, hospital stays, instead of making plans to live the end of their life as they wish and at their home. Although it was challenging, and we felt unsupported at times, we are proud that our recent experience with the death of our sister would be considered a "good death". She was at home as she wanted, peaceful, and with immediate family surrounding her.

The article states that research shows “physicians die in hospitals at the same rate as everyone else”, but our sister was not going to be one of those statistics. She felt strongly about never being in a hospital again and we were not going to let her down. Just as the article suggests, there is still work to be done - some medical professionals don’t have confidence in how to talk about death, access to palliative and hospice care in certain areas of the country is a problem, overly-aggressive or unnecessary treatments for those dying still happen. And maybe the stress and uncertainty that comes with independently caring for someone dying at home isn’t for everyone. Khullar states that there are differing opinions of what a “good death” means. Indeed, and adhering to the patient’s and family’s wishes is key.

Oprah just shared a spectacular interview with B.J. Miller, a palliative care and hospice physician, where they discuss death and dying. They examine deep subjects such as preparing to die well and spiritual aspects of death, with tough questions from Oprah such as: “What has being around the dying taught you about living?” B.J. Miller’s calm and positive attitude toward death is worth your time. We liked much of what he said, but this particularly resonated with us: “Dying isn’t so pretty….when someone can sit with you and be with you in that state- is an amazing thing to offer someone. To be present. It can heal many wounds.”

So not all are bad at death. Our sister and B.J. Miller can teach us some great lessons - to be realistic, to not be afraid, and to exist in the now.

Jan. 26, 2017 Caregiving and Grief News Roundup

We were enthralled with this NY Times article- our children were ignored and things got messy while we read it start to finish. B.J. Miller is one inspirational man - a triple amputee who went on to become a physician focused on changing palliative care. His goal is to “de-pathologize death.” What is a good death? How do you judge it? What matters in the end? Such important questions, and we are so glad B.J. is asking them. 

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Another recent NY Times article asks "Who Will Care for the Caregivers?" and states that "we — as doctors, employers, friends and extended family — aren’t doing enough to help them." It covers so many points we agree with! Family caregivers aren't always included in decisions about patient care but are expected to perform complex medical tasks at home with little training.  And as we've said, policies that increase paid leave and provide flexible work schedules would help support family caregivers. 

Yes, yes, this is what we’ve been saying. Being a family caregiver is difficult. Can’t we make it easier? As this states, “Affordability for long-term care is surfacing as a clear and growing challenge for families.” Caregivers are gaining influence.

Anne Tumlinson of Daughterhood highlights one of our favorite topics: sibling caregivers, and we were lucky enough to be mentioned in the post. She shares tips for avoiding conflict and building better sibling relationships while caring for aging parents.

This beautiful and honest story from Zach Sobiech’s sister, Alli, is worth a read. We relate to her story of sibling loss, anxiety and grief, and efforts to help her child know his deceased uncle.

As we mentioned beforePrince Harry has spoken about grieving the death of his mother. People magazine recently featured his story about grief. He shares that he suppressed his emotions for a long time, but now is energized after finding a way to carry on his mother’s legacy through his charity work.

This radio show via KALW in San Francisco is part of a series covering end of life issues. Palliative care training is now offered in almost all medical school training, but unfortunately there is a shortage of doctors specializing in this. Dr. Jessica Zitter is interviewed, an ICU physician who specializes in palliative care, and talks about her personal practice “resisting the urge to do more” and asking her team to think about “how is this really going to help?”