Hospice, Palliative Care and End of Life: Practical Considerations

Those who follow me know my areas of interest. They revolve around a somewhat narrow constellation of topics. One area is adult learning and how it works to drive an educational strategy for patients and HCP (healthcare providers). Another area is social media and how we must think goals and strategy when we want to apply social media to solve a communications, education, marketing, or brand problem. Finally there is the topic of hospice and palliative medicine (HPM) and how important that service is for both patient and caregiver.

One organization that’s also looking at the practical aspects of HPM and EOL is a company I was recently introduced to called Everplans (www.everplans.com). Everplans is a website that addresses, in a new and practical way, the topics of end-of-life and death. (Yup: yet another bummer post by me.) But I must say that after having faced these issues with Donna’s passing 18 months ago, and now in the middle of organizing my own life, this website comes as a welcome resource. Dare I say a bit of light for my darkness?

The site is broken down into categories that apply to all of us: Long Before Death, Eldercare & End-of-Life, After a Death, and Be There for Someone. These buckets are further broken down into key components or steps. These steps are presented simply, clearly with articles and tools, links and explanations, designed to educate and take action. The site is a one-stop resource for anyone interested in planning or learning: those in their 20s and 30s, and those facing the passing of a loved one, post death realities, and what to do and how to do it when a friend or family member dies. I know that for me, I winged the practical considerations at Donna’s death and stumbled along the way—largely I was on autopilot and just pushed through those first few weeks.  Everplans could have served as my checklist and backstop resource. It may have even helped me face the grief of doing this alone.

More than ease of use, this site and the practical steps it presents are part and parcel of my larger reference point: HPM gives so much to the patient and caregiver. HPM is about treating the entire patient clinically, emotionally, and spiritually, while considering the same gestalt of the family. This is especially critical during the end of life and after the death of a loved one. I believe when we bring the services Everplans offers into caregiving, when these issues and tools are part of a family discussion, it opens emotional receptors within us that connect us to our loved one. It not only takes the worry and struggle with these topics off the table; it opens the conversation to include topics we may not want to address. But in addressing these issues openly we free ourselves and our loved ones from struggling with them, especially when they are least able to. Everplans is part of HPM, part of how to better live our lives.

In my opinion HCP and HPM providers should be pointing patients and families to Everplans (or sites similar) in order to guide patients through their options and to ensure critical paperwork is completed and put into the electronic medical records. Eliminating a potentially emotional and difficult task will aid the continuity of care and the well being of the patient, the caregiver, and family. 

Outcomes and Self-Reported Patient Experience: How Social Media is Driving Change

This week the NEJM published an article by Manary, Boulding, Staelin and Glickman “The Patient Experience and Health Outcomes”. This article examines the question “Do patients’ reports of their health care experiences reflect the quality of care?” The authors examine the fact there is little if any consensus on this topic. Some studies show there is no relation to quality of care and is associated with poor outcomes. Other studies found better patient experiences, more than adherence to clinical guidelines, are associated with better outcomes. This is an excellent review and in part speaks to the growth of social media and patient’s involvement in their care.

The money shot in this article is this line “…studies have shown that patient-experience measures and the volume of services ordered are not correlated: in fact, increased patient engagement leads to lower resource use but greater patient satisfaction.” I realize this is not improved patient outcomes but it is about patients being self actualized around their healthcare.

This finding speaks volumes to social media and the topics addressed during the Sunday evening chat at #hcsm. Patients involved in their own healthcare effect cost and are more satisfied with their care. When we address the problems we want to solve we are more involved and take greater control over our lives. As involved active patients we become advocates for our healthcare as well as helping others seek solutions to similar problems.

There is more we can do to improve and increase patient engagement in order to realize improved outcomes, greater satisfaction, and lower cost. We can drive patient’s to become more healthcare active, aid them in learning about their health.

This is not something we randomly apply to any patient. It is something that becomes part of the exam and the in-office visit. The physician should be performing a brief needs assessment on all patients. Damn, it’s not like we are not being handed reams of paper at a visit to fill out. A short assessment to determine where the patient resides on his/her self-learning continuum, where they turn to for knowledge, what are the health problems they want to solve, and do they want to be part of an office based community?

Let’s be real, we will never get near 100% participation but we will realize small committed groups of patients and that demographic will tell us about other groups within our practice. It will drive patient changes and improve outcomes. Changes we can drive in one group will translate to other groups. And this becomes self-actualized through the reality of social media and learning. These patient success stories will be shared and will drive new entrants within a practice.

This trend will not continue on its own without some help. It may be largely driven by the economy and the fact many more Americans are unemployed and struggling to pay their healthcare premiums. Now is the time to leverage what is happened to create deep links to behavioral changes and improved outcomes. Simple small steps at the office level one practice at a time will reap great benefits. Today not tomorrow. 

Grief, Depression, and Antidepressants: Really!

Back in May of 2012 the NEJM published the following article “Grief, Depression, and the DSM-5” written by Richard A Friedman, MD. I posted a look at the article and my own experiences.

“The APA for DSM-V is considering characterizing bereavement as a depressive disorder and encourage clinicians to diagnose major depression in a person with normal bereavement after two weeks of mild depressive symptoms. The data that Friedman presents shows that depressive symptoms in the context of grief are different in course and prognosis from clinical depression. Data also shows that 10% to 20% of bereaved people do not get over their loss. Friedman states that clinicians should be able to distinguish between clinical depression and uncomplicated grief, so as to ‘normalize, not medicalize, grief’. Full post here.

Friedman noted that on May 9, 2012 the APA announced that bereavement exclusion will be eliminated from major depression definition but a footnote will be added indicating sadness with mild depressive symptoms should not be viewed as a major depression.

It seems the APA is having a bit of change of heart on the bereavement exclusion.  Peter Whoriskey wrote in the December 26th issue of the Washington Post “Antidepressants to treat grief? Psychiatry panelists with ties to drug industry say yes.”  Whoriskey states that the new DSM-5 removes the bereavement exclusion which will allow a person who is grieving and suffering from major depression to be treated. Though the footnote in the DSM-5 warns about confusing normal grief and mental disorder. Some critics say is too little to prevent mass marketing of antidepressants for bereaved adults. Will the average physician seeing a patient post loss of a spouse be able to identify normal depression from complicated depression? Will the strum and drang of antidepressant promotion drown out measured and deliberate diagnosis?

Whoriskey spends considerable ink on the APA panel connections to big Pharma and what that means in adding the exclusion and how this will make grief a disorder and a large lucrative target for drug development. I am not sure I disagree or agree with this analysis but I see it differently.

First, I would like to see someone or some group study palliative and hospice care and its effect on grief following the death of a loved one. Does fact palliative and hospice care treats the entire patient and the caregiver provide long-term benefits to the survivor? Will we see a lower incidence of complicated grief with families that benefited from palliation and hospice?

Second, using available support groups (CancerCare.org, American Cancer Society, etc.) can go a long way to help those grieving at the loss of a loved one. I know for me that CancerCare.org was an important and long-term part of my journey during my wife’s cancer treatment and passing. There are organizations out there that know and understand what we are going through and how we are coping.

Finally, we need to have more conversations care, treatment decisions, needs, and goals of care between the care team, including physicians, and the patient and family. There are 10 domains of quality care for end of life. It is my belief that if we apply these domains we can reduce complicated grieving.

1. Symptom Control

1. Communication

3. Decision Making

4. Traditions, Customs, or Way of Life

5. Religious and/or Spiritual Care

6. Psychosocial Care

7. Last Hours of Living

8. After the Death

9. Overall Patient Care

10. Overall Family Care

Better Care at the End of Life: What Can We Do?

On January 3, 2013 Dr. Ezekiel J. Emanuel published an opinion piece in the New York Times titled “Better, if Not Cheaper, Care”. His article addressed long held beliefs about end of life (EOL) costs and care and what we can do. Dr. Emauel put some holes in my view and attitude toward EOL and those of others. At the same time he supported a film I want to produce on palliative management and hospice care.

First, he pointed out that people do not spend more on healthcare in their last year of life than they do in the entire rest of their lives. Fact, 6% of Medicare patients who die each year do make up the majority of costs in the range of 27 to 30%. This figure has not changed in decades.

Recent studies show hospice may reduce costs in the last year of life for cancer patients by 10 to 20%. But they find no savings from hospice care for patients who die of other causes such as emphysema or heart failure. This may be because patients are entered into hospice care too late or the cost of labor intensive care.

Dr. Emanuel points to the need to change end of life care. Many Americans die in hospitals when the choice is to die at home. The ICU still accounts for 20% of deaths or post discharge with many patients experiencing symptoms such as pain that is controllable with appropriate palliative care.

 Four points are presented that will improve end of life care.

  1.  Train HCP how to talk to patients and families about EOL care.
  2. Pay physicians for a one time talk about EOL care.
  3. Every hospital should be required to have palliative care services. He notes that over 40% hospitals with greater than 50 beds do NOT have palliative care services.
  4. Revise eligibility for hospice care. The decision to enter palliative care is made on 6 months to live basis. It should be changed to need for specialized care such as pain management.

 First, this article opened my eyes to the reality and complexity of end of life care. I need to adjust my thinking about how we approach EOL and what we can achieve.

Secondly, the four points made to improve care can be achieved and will make a difference. These points support a new project I am producing. I want to make a short documentary film about my experience with palliation and hospice care and those who have not received it. My goal simply put, is to create a platform that opens a dialog between the following groups to improve decision-making during serious illness.  

  • ·      Patients and family
  • ·      Healthcare professionals
  • ·      Patients and healthcare professionals

I believe a film like this will aid this discussion—without tension—and in a way that evokes a positive response. We want to make it easy and productive to discuss palliative care, end of life, and hospice. We want to improve care and optimize time and quality of life