Hospice Care and What Makes a Good Death

By Maggie Cunningham

"There is no archetype for a 'good death.'" - Joe Rotella

Provider Magazine  recently held a Twitter Chat with healthcare professionals. Using  #providerchats as a conversation tag and labeling different topic codes (ex. T1) to organize the flow of commentary, Provider Magazine was able to organize an hour of forward-thinking and thought provoking conversation.   The topics included in this session ranged from the attributes of 'dying well' to living wills and preparing for death.

The first topic of conversation put into question whether or not people can actually die well, and if so what those attributes would look like. Provider Magazine noted that a large influence of end-of-life (EOL) decisions is culture. Joe Rotella, AAHPM Chief Medical Officer noted that the attributes of dying well are often times the same as how we live well, "in accordance with what matters most and gives us purpose and meaning."

Another important note in the first topic of discussion was that many patients in developing countries around the world view EOL differently. They are generally more accepting of death and they acknowledge both its importance and its normality. Pallimed  chimed in here adding that in order to figure out how to die well, we have to look at the whole person, and not just the symptoms or diseases that their care is focused on. 

"It's not enough to die, everyone gets that.
The thing is to die well, with minimum pain and maximum honor." - Bill Myers  

The second topic asked what the current problems were with dying well. Fewer than half of all eligible Medicare beneficiaries use hospice. Many that do only use it for a short period of time. Understanding the full spectrum of hospice and what it can do may make the potential beneficiaries less reluctant to take advantage, and do so sooner.

Part of this hospice discussion also involves complete openness about a patient's prognosis, even if it is uncertain. "This is beginning to change in medicine thanks to palliative care," said Christian Sinclair . Further research is needed in palliative care but debate still exists on whether patients with serious illness should even be asked to participate in such studies.

For many patients, relief may outweigh the desire to be conscious, "but we don't always ask our patients what is most important to them because medicine often assumes that everyone wants the same thing," Dr. Eric Widera  said.

Another huge problem exists now because so many families are opting to take on such care themselves. This is worrisome to many officials like Dr. Widera, who say that the complex care these families are taking on at home requires entire healthcare teams in institutional settings.

"Staff can grieve too. It can be hard to say that long goodbye." - Bill Myers

The topics that were brought up next involved living wills. It asked who makes 'the call' and why living wills aren't always enough.  Rotella said, "The informed, competent patient should make the call on goals at EOL. [They should] make their wishes known, and choose their surrogate." He also pointed out that living wills can be narrow, and Provider Magazine agreed, with several important additions.

For instance while living wills can be oral or written, the latter (written) is advised, in the event that one is unable to communicate when the living will is executed. It is also important to provide a copy of the living will to all parties involved, including the doctor, family members and all potential surrogates, before it is needed. Lastly, unless one is wearing a bracelet, the living will does not apply to Emergency Medical Team efforts.

"Physicians should be taught that death doesn't mean failure." - Provider Magazine 

The last two topics can be summed up together. They involved how we talk with people about arranged death, and how people get their heads around the topic of death and prepare for it. Often, dying people hold on to life because they can sense that others around them aren't ready to let them go. People also sometimes feel that speaking about death may seem like abandonment because it suggests that one is giving up.

Because of these reasons, it is important that the patient takes an active role in defining what a 'good death' would be for them. It can be beneficial for all parties involved to join support groups online or in person and to read books that caretakers may read in similar situations. Hospice care and death are sensitive subjects. 

"Time and life go on after terminal illness diagnosis,
regardless of whether one feels ready to cope." - Provider Magazine

The overall theme of this chat was openness on all levels. Being open about what is happening and what is to come will not only prepare the patient, but also the family and caregivers and provide them with a realistic outlook, it also makes having these conversations easier.  In addition to being open and prepared, being personal is of the utmost importance. There is no standard view of a good death, but it does exist.

*Opinions expressed in any of the included quotations or their authors do not necessarily reflect the opinions of Kindred Healthcare. This blog post is a compilation of tweets from a twitter chat hosted by Provider Magazine.