My mother is a nurse, and has worked for the palliative care organization Hospice at a few times in her career. She recently returned to them, at a time when her mother has been placed in a nursing home specializing in care for those with dementia and other cognitive impairments. We have had many conversations about care at the end of life, and how it is often done well and when it’s not handled quite as well. I have to say just from what she has related to me, and from having relatives end their lives in the care of Hospice, their deaths have been much better than those patients who died in the various hospitals she has worked for.
Even in our own family, when my paternal grandfather was fighting cancer at the end of his life, we witnessed the chaos and confusion surrounding his care by multiple doctors, many of whom weren’t always communicating with each other. My grandmother, who was understandably under high stress because of his illness and didn’t have the benefit of inside knowledge into how the medical world works, couldn’t be counted on to ensure that their wishes were communicated clearly to every organization, doctor and agency that needed to know.
End of Life decisions are something we don’t really talk about in the US. Watch any medical drama, and you will see the death of the patient as a sign of the failure of the doctor, or the failure of the team to do everything they could. They’ll throw everything including the kitchen sink at the patient, even when the prognosis going in is poor; when the patient dies the doctors and medical staff take on this enormous burden that they should have done more. The reality is that death is a natural part of life…everyone dies. We need to begin having this conversation in terms that don’t include Death Panels or court fights aired on the evening news.
Everyone should specify how they want to be cared for at the end of life. Do you want to be on life support? For how long? How about a ventilator? Do you want to suffer through multiple rounds of chemo when you have stage IV cancer? These are decisions that everyone needs to make for themselves, in consult with their family, their doctors and their priests/pastors/whatever spiritual leader you ascribe to or no religious leader at all if that is your choice. Taking a lesson from my grandfather’s death, those choices need to be documented in a way that is easily accessible to everyone on the care team. This means that no matter where you are, your wishes are respected.
Some experts say this opportunity has not been realized, but advocates and policymakers are focusing on fixes that would make the digital versions of end-of-life planning documents easy for health care providers to access. This is a step in the right direction. This article from Kaiser Health News talks more about this important issue, and how Electronic Health Records could help.