End of Life Care Needs to be Expanded

By: S. Craig Greer, Director of Special Programs at ComfortCare Hospice


There is a great deal of discussion about end-of-life care and that’s good news. There are many grassroots movements urging people to have end-of-life conversations before a crisis or serious illness occurs. The documentaries Consider the Conversation and Consider the Conversation 2, ( http://www.considertheconversation.org/ ) as well as the PBS Frontline Special, Being Mortal ( http://www.pbs.org/wgbh/pages/frontline/being-mortal/ ) by physician Autl Gwande , give us a glimpse into how we are currently dying in the 21st Century. Likewise The Conversation Project (www.theconversationproject.org ) and Engage with Grace ( www.engagewithgrace.org ), have prompted people to reflect on the importance of starting the conversation with loved ones early and continuing throughout life as health care needs change.


But, there is also the story of Brittany Maynard and physician assisted suicide which brought to the forefront - “the right to die” movement. As a result we have a cacophony of voices using similar phrases, but having very different meanings.


Dr. Ira Byock, a palliative care physician and director of the Institute for Human Caring of Providence Health and Services, argued, correctly I believe, in an Op-Ed piece in the LA Times, language once used for hospice - like death with dignity, has been co-opted for the assisted suicide movement. ( http://www.latimes.com/opinion/op-ed/la-oe-0201-byock-physician-assisted-suicide-20150201-story.html#page=1 )


Hospice is not akin to physician suicide. Hospice is about quality of living with a terminal diagnosis until life comes to a natural end. Hospice neither prolongs life, nor hastens death – Hospice is about comfort and quality of life. Hospice is focused on aggressive management of pain and symptoms. Hospice is about helping people direct their own care based on their goals, values and beliefs. Do you want to go on a final trip? How can we make that happen? Do you want to spend more time with your family? How can we help you have the best days possible with the time you have left?


After nearly 15 years in hospice pastoral care and administration, I understand that there are times people want to give up. Patients can become depressed and worry about being a burden. I know sometimes pain can be unbearable. I have also seen those needs successfully and skillfully addressed by hospice physicians, nurses, social workers, chaplains and volunteers. I have seen many good lives lived more fully to the end when good care is provided.


I would not dare make a judgment about Brittney Maynard’s decision – nor would Dr. Byock in his recent editorial. But, what made suicide seem necessary? Was it a lack of options for excellent palliative and hospice care? We should not be rejoicing she had the option, but disheartened that there was not enough confidence in hospice and palliative care to alleviate her fears and her suffering and give her what she needed so she could spend more quality time with her loved ones.


We are in a time when hospice is being squeezed - just like all healthcare providers that receive Medicare dollars. Hospice is expected to do more with less. Meanwhile, physicians don’t have the time, training, or reimbursement to have the time consuming, frank discussions with patients and families which are needed much earlier in the disease process. And, as a culture we resist death at the cost of not living fully. Families are often in denial and, more often, just plain afraid to have the conversation. We trade precious moments for the hum of machines and treatments that can often make us sicker and have serious side effects that diminish the quality of living.


As a result patients are often referred to hospice very late and don’t receive all the benefits to which they are entitled. Far too many hospice patients die within 7-10 days due to late referrals from physicians or hospitals. These patients could often have had more quality time with their families and opportunities to set priorities if hospice had been presented as an option sooner.


Most humans are people pleasers – especially when it comes to their physicians. Most of us want our doctors to like us we want to comply and we hesitate to ask questions. We acquiesce to treatments suggested, often without understanding or asking the necessary questions – what are the side effects? What will it cost? What are the benefits? As a result, we don’t know there are other treatment options unless someone tells us. Procedure/treatment based reimbursement often drives recommendations; as a result patients may not ever be told there are indeed alternatives.


Most end-stage diseases can be manged well in the home. We need to improve end-of-life care, instead of reducing hospice benefits. In fact, hospice and palliative care benefits need to be expanded to cover chronic illnesses when improvement is not possible, and death may be years away. Disease management should replace aggressive treatments that do more harm than good. We should couple hospice/palliative care with treatments – and not deny aggressive treatments when patients choose hospice – which is yet another reason why many are afraid to choose hospice care.


Many years ago I met with nurses at a cancer clinic for a talk about hospice. I discussed our first priority was to find out the goals of the patient and their loved ones. I suggested the nurses probably did the same thing. The response floored me – “No, we just tell them when the next treatment is?” This was shocking to me and reflective of how medicine has become too focused on task, procedure, and treatment and less centered on the person receiving treatment. Medicine has become disease focused rather than patient focused.


My hope is that we do everything we can to continue this discussion of how we die. I hope we can exhaust every avenue of excellent palliative care and reduce the need and desire for assisted suicide. Physician assisted suicide is a slippery slope that has severe consequences, especially for the elderly.


Understand that hospice has never been about being cheerleaders for dying, rather hospice advocates for living well, all the way to the very end.