Journey of the End of a Lifetime

by Joanna Smith on Jul 19, 2016

This is a blog about the end of a life, an option possible because of the newly established California End of Life Option Act.

I Can’t Do What I Want To Do Anymore
I first met PS when she was in a nursing home after a hospital stay. I had been contacted by a physician who had an End of Life Options Practice where he assisted people at looking at all of their end of life options: Palliative Care, Hospice and Aid in Dying.

PS was 65, depleted after a chaotic stay in the hospital and a discharge to the nursing home for rehab “to help her get strong again”. Her speech was slowed by her cerebellar ataxia, but her intent was clear: “I can no longer do the things I want to do; I can no longer be spontaneous; I can’t walk with my walker and I’m not getting stronger from rehab. I want to pursue my option to end my life and take the medication so I can die with dignity.”

I had had to think long and hard before I had decided I could work with her. I teach and credential people who want to become advocates: could I offer her the open support and good boundaries this process required? This would be her own death, and my work was to help her have as easy a process as possible. No room here for doubts on my part or counter-transference. Could I support her one thousand percent in her quest? Because if I could not, I had no business being an advocate on her behalf. At this point, she needed people who were complete in their support of her wishes.

I had decided that I was one of those people–took a deep breath–and stepped forward to help her create the kind of death she wanted.

First Best Practice for Advocates Working With Aid-In-Dying clients: Know Thyself. Very well.

Insights on Pain

by Joanna Smith on Jul 26, 2011

I was reading a post at the Center for Advancing Health (www.cfah.org) on Chronic Pain that a colleague had posted on LinkedIn.  Because chronic pain is a frequent reason that clients contact Healthcare Liaison, I read with special interest a quote from  Dr. Paul Christo, director of the multidisciplinary pain fellowship program at Johns Hopkins School of Medicine.  He is discussing the frequent referrals that people receive at pain management clinics for psychotherapy:

Dr. Christo:  “A lot of people have the misconception that what I’m telling them [when recommending therapy] is that their pain is a figment of their imagination. That’s not what we mean. Pain has such an emotional component and psychotherapy is extremely useful in terms of helping patients reorganize and rethink how they interpret it and how it affects their lives.”

One of the most frequent comments I hear from clients with chronic pain IS “they told me it was all in my head”.  It seems that the dialogue between consumer and provider about pain is frequently a “mismatch”:  the provider thinks he or she is communicating one view, and the consumer, defensive from experience with healthcare systems,  hears a much different version.  These are times when it is most helpful to have another person in the room, monitoring the conversation so the communication can be corrected at that moment, rather than leading to even more pain–emotional and physical and delayed help–in the future.

Another very frequent comment from families, particularly families coping with end-of-life issues for a relative, is “I don’t want them to have too much medication and become addicted”.  I have always wondered about that comment:  it’s not that people want their family member to die unaddicted but in pain, they simply haven’t considered what that statement means in end-of-life care.  Strong pain medication–like opioids– (e.g. Oxycontin) do carry a risk of addiction, but with people at the end of life, addiction is less of an issues and pain management is the main issue.

In a review of studies on pain management,  Cochrane Review (Cochrane Reviews investigate the effects of interventions for prevention, treatment and rehabilitation in a healthcare setting.) found that:  “for people without a prior history of addiction,  (italics added) less than 3%  of patients who take opioids regularly for pain will become addicted to the drugs.  That means almost everyone without a history of addiction could reasonably talk with a healthcare provider about opioids for relief of pain: addiction is not really the issue.  what IS of importance, especially at end-of-life, is management of pain so people can complete what they need to before they die.  This may mean giving them pain-free time to talk with family, sit up in a chair, eat a favorite food or enjoy music.  Good pain management improves the quality of life for those remaining days, months and years and is a necessary part of a comprehensive plan for anyone.

 

 

Advance Directives—and Physicians Order on Life-Sustaining Treatment

by Joanna Smith on May 7, 2009

For years there have been “Advance Directives” that you could fill out to state what your wishes were about care for yourself should there be a time when you could no longer state your wishes.  Advance Directives allowed people to appoint agents to make healthcare decisions on their behalf, and to state the kinds of care they would wish to have.

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