The Ecology of Death

The Ecology of Death: Advocating for a re-orientation of our society's approach to death from the assumption that we can "fix" all medical problems, even at the cost of oppressing those being kept alive, to an acceptance of our mortality and finitude.

An article I co-wrote, reproduced with permission from the Southern California Psychiatric Society.

https://endoflifeoption.wordpress.com/2015/04/07/a-time-to-live-a-time-to-die/

The Art of Dying

Top 10 Reasons Why Psychiatrists Should Support SB-128

By Michelle Furuta, MD and Arsalan Malik, MD

“But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life.  When we forget that, the suffering we inflict can be barbaric.  When we remember it the good we do can be breathtaking.”

-Atul Gawande, Being Mortal

Science and Medicine have come to the point where we can keep the dead alive. Technological medicine can now maximize longevity but it still cannot adequately alleviate some cases of extreme suffering at the end of life, and, when not used thoughtfully can create more suffering than it prevents. It is very different from any other point in medical history, and raises new issues for our profession to consider. It demands that Psychiatrists actively engage in the conversation about how we die in America. It calls on us as uniquely positioned experts at the intersection of medicine and mental health to weigh in on what we think about this issue, and to illuminate some of the nuances that only we may see.

On January 20, 2015, Senate Bill 128 (SB-128) End of Life¹ was introduced into the California Legislature by Senators Wolk and Monning, amidst a nationwide resurgence in support of legalizing aid in dying.  The movement was precipitated by Brittany Maynard’s widely publicized use of Oregon’s Death with Dignity Act to end her life on November 1, 2014.  There are currently 5 states in the U.S. with similar laws – Oregon, Washington, Montana, New Mexico, and Vermont.  Twenty seven other states currently have bills under consideration in their legislature.²  If it passes into law, psychiatrists may be called upon to evaluate a patient making a request who may have a mental illness interfering with their capacity to make that decision.

Below are the top 10 reasons why we support SB-128: 

1.    There is a massive difference between suicide and taking aid in dying medication.  The word “suicide” is currently defined as the act of intentionally taking one’s life.  It is typically associated with mental illness or an acutely distressing circumstance, where a person is suffering from a mental disorder or an altered state with distortions of reality, causing them to wish to die.  This is very different from a person who is dying of a terminal illness and wants desperately to live, but is going to die, is enduring intractable pain and suffering in the death process, and makes a thoughtful, rational choice to take a lethal dose of prescribed medication after weighing the risks and benefits of all available alternatives and having had in depth conversations about what matters to them with friends, family, and their healthcare providers.  So we now have two situations which are very different, but are being defined by the same word.  This is a problem. The chart below highlights some of the differences between suicide and aid in dying:

Suicide	Aid In Dying
1.     Can have a devastating impact on individuals, families, schools, and communities	Can provide peace and closure for individuals, families, and communities
2.     Often done in secret and isolation	Two physicians and 2 witnesses (most often family and/or close friends) must sign off on the request.  Patients often have the support of their broader family and friends, and are often present when the person passes.
3.      1 out of 25 success rate	100% success rate, and may reduce the incidence of suicide and suicide attempts in this population
4.     Is often violent	Is non-violent.
5.    Results from a dynamic mood state which is theoretically treatable	Results from a rational choice independent of mood.
6.    Approximately 40,000 Americans die from suicide every year.3	Last year in Oregon, 155 prescriptions for life-ending medication were filled, and 120 were used.4
7.    Access to lethal means increases the likelihood of death	Access to lethal dose of medication can reduce the likelihood of suicide
8.    51% of Americans support “assisted suicide”5	70% of Americans support “ending a paient’s life by some painless means”5

SB-128 proposes that the terminal illness be listed as the cause of death, not the life ending medication.  We agree.  To list the medication as the cause of death (or worse, “suicide”) misses the bigger picture.  If a 3-story building were engulfed in flames, and just before it collapsed from the fire you threw a rock at the last standing support beam, causing it to crumble to the ground, would you say the fire destroyed the building or the rock?  When other palliative measures are used to hasten death, they are not listed as the cause of death.  This should be no different.

2.    Patients should have the right to choose (and doctors should not be criminalized for honoring and supporting their choices).  We are not advocating that people use the law; we are advocating that they have the CHOICE.  Nobody is forced to participate.  The principle of liberty in this country supports patient autonomy – the right to make decisions about your life and your health as long as you are competent and don’t hurt anybody else.  What matters in the end, and the choices surrounding the end of one’s life are among the most personal and important decisions one can make.  What right do we have to categorically deny someone who is in a constant state of unimaginable suffering this option?  It is their decision to make, even if we as individuals may make a different choice.   It is our role and our responsibility to support individuals in this process, treat mental disorders that may be interfering with their decision-making ability, compassionately facilitate end of life discussions, and to respect, uphold, and advocate for their decisions.

We understand that the principle of patient autonomy must be balanced against the public good and what is good public policy. The bill has numerous safeguards built into it to prevent abuse and coercion.   Based on data from Oregon and the Netherlands, there is no evidence for the claim that legalization would have a disproportionate effect on patients in vulnerable groups (e.g. people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations).⁶

3.    We took an oath to do no harm.   Regardless of which side of the debate you are on, it is clear that “harm” means different things to different people. We have moved beyond the outdated, I-keep-you-alive-therefore-I-do-no-harm interpretation of the Hippocratic Oath.  In certain cases, forcing someone to live in a tortuous state of prolonged suffering before death when it is incongruent with their personal end of life wishes is doing incredible harm.  The dying who meet criteria to use this law are a small minority of the population.    We advocate for them as being among society’s most marginalized and vulnerable, and understand the depth of suffering, desperation, and fear that comes with having no options to maintain a reasonable quality of life.   There is sufficient evidence of harm being done because of the absence of this law.  Few will use this option, but many will have peace and tremendous relief of anxiety knowing it exists.

While many psychiatrists already support legislation like SB-128, there still remains the potential challenge of feeling confident to do these evaluations well. Reconciling how to assess patient competency with or without the presence of depression, what to do in cases where a patient goes from competent to incompetent after the medication is prescribed, being able to distinguish a plea for reassurance from a rational request, and management of the physician’s own countertransference to a dying patient are among those challenges which warrant the development of comprehensive guidelines in this area.⁷ 

 

4.    The religious beliefs of one group should not dictate the medical care options for another.  For some people, religious beliefs may preclude them from using this option or engaging in the process as a physician.  But not everybody shares those beliefs, and participation is voluntary.  A 2013 Gallup poll found that 70% of the population supported the legalization of this practice.⁵   We are highly trained as Psychiatrists to be aware of the appropriate distinction between our beliefs and those of our patients.  To convince a patient of a particular course of treatment based on your personal religious beliefs as a physician is unethical and an abuse of power.

5.    It is happening anyway.  Hello gorilla in the room.  The absence of this option increases the risk of patients using painful, dangerous, and violent methods to end their lives, including firearms and online ‘suicide kits’. They will be forced from an aid-in-dying situation to a suicide situation.  Some of these patients will stop eating and drinking to hasten death, but it can take weeks.  Hospice care is permitted to dose escalate opiates to control pain which may also hasten death.  Some patients will attempt to overdose on the medications at their disposal, but others fear it would not work and they would only feel worse.  Palliative sedation can put someone in a coma if pain cannot be controlled.  But it is not known how long they will stay in this state before they pass, and they must be in a hospital - not the comfort of their home. This law offers a safe, humane, and dignified means to pass in peace, at home, with loved ones present, is painless, and 100% effective.

6.    To advocate for all possibilities of achieving a “good death”. The legalization of this bill does not negate the highly needed development and expansion of other support options available to the terminally ill at the end of their life – particularly in the psychiatric and psychological domains.  We hope that discussion of this issue will help to redirect our attention to development of more thoughtful conversations about what matters to individuals in the end, and a more sophisticated understanding of how to help people achieve a good death.   There are reports of this cultural shift transpiring in other places where aid in dying is legal⁸.  Access to high quality palliative and hospice care is desperately needed so it can become available to all who need it in a timely fashion, and this issue should not be relegated to the back burner, regardless of the fate of SB-128.  A recent study of patients with hematologic malignancies showed that patients are referred to hospice far too late (or never) – with an average length of stay less than 10 days before death.⁹  The truth of modern death in our society is that getting a ‘good death’ is rare.  Because Psychiatrists are poised at the intersection of the mental health and the medical communities, we have a responsibility to educate ourselves and the public about how to have these important conversations, and to advocate for better death experiences.  

7.    Psychiatrists are experts in understanding how people move through transitions.  As psychiatrists we are charged with the responsibility of helping people move through the full spectrum of psychological challenges that life presents us – from the common to the rare and everything in between.  The transition to death is universal, and affects us all.  Death is a part of life.  It is an influential presence in our everyday lives on the most basic emotional levels.   How we understand, manage, and respond to the complexities of our feelings about death has massive implications for our lives and the lives of those we touch.  We are charged to explore the uncomfortable, and ask the difficult questions in ways that facilitate compassion, safety, and understanding.

8.    Psychiatrists should be active on the frontlines of progressive change in the country.  The de-stigmatization of homosexuality by removing it as a mental disorder from DSM in 1973 is a good precedent in this regard. That decision could not have been more fraught, controversial or “political” back then. Thankfully, common sense and the grass roots efforts of thousands of gay psychiatrists and citizens meant that we ended up on the right side of history.

9.     We do it for our pets out of love and compassion for their suffering.  While the technicalities are obviously completely different with an animal, there is a relevant parallel.  Supporting the decision of a loved one to be released from the throes of pain and suffering at their request is a courageous and altruistic act.

10.  The ends of stories matter.  Studies have shown that perceptions of an experience are shaped by 2 things- the peak emotion and the end emotion.  The end of a life’s story is not just important to the dying, it is crucial to the emotional transition of the living.  Psychiatrists have heard countless traumatic stories from patients of how they have had to watch their love one die – in pain, prolonged suffering, helpless, and out of control.  Sometimes patients cannot even remember the positive stories of their loved one after a traumatic death.  One patient recently recounted “…all I can see when I think of her are those last days…her screaming, confused, in pain, and nobody could help her...hospice wasn’t helping…we couldn’t help her…”.  It is common to hear people say “please don’t EVER let that happen to me” after going through the traumatic death experience of a loved one. 

Death and fear are close friends. All too often fear takes over and leads to a denial of the inevitability of death. At face value, the issue of aid in dying elicits fear and hesitation.  Concerns for protective measures and responsible use are valid.  The state has a responsibility to provide those measures and physicians have a responsibility to implement the law appropriately.  As with all complex issues, when we look closer to examine the data, learn the history, and hear the stories, we can see beyond our individual fears and new truths emerge.

We are advocating for a re-orientation of our society's approach to death from the assumption that we can "fix" all medical problems, even at the cost of oppressing those being kept alive, to an acceptance of our mortality and finitude. Remaining ‘neutral’ as Psychiatrists on this issue does not serve our profession, and more importantly, it does not serve our patients or society at large. Please read the bill. Do your research. Listen carefully to both sides.  If you support the bill as we do, you can send a stock or a customized letter to your senator through Compassion and Choices’ site:  https://www.compassionandchoices.org/what-you-can-do/get-involved/ask-your-state-senators-to-support-end-of-life-options-bill/

We invite your thoughts, feedback, and stories.  Please join the discussion at:  https://endoflifeoption.wordpress.com/

References

1. California Legislative Information, full text SB 128. Searchable athttp://leginfo.legislature.ca.gov/faces/billSearchClient.xhtml
2. https://www.compassionandchoices.org/what-you-can-do/in-your-state/
3. http://www.cdc.gov/violenceprevention/suicide/
4. https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx
5. http://www.gallup.com/poll/162815/support-euthanasia-hinges-described.aspx
6. Battin, M. et al. “Legal physician‐assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups”. J Med Ethics. 2007 Oct; 33(10): 591–597.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2652799/
7. Hamilton N. et al. “Competing Paradigms of Response to Assisted Suicide Requests in Oregon”. American Journal of Psychiatry. Volume 162, Issue 6, June 2005. 1060-1065.http://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.162.6.1060
8. Norton, E. et al. “What Their Terms of Living and Dying Might Be: Hospice Social Workers discuss Oregon’s Death With Dignity Act”. Journal of Social Work in End of Life and Palliative Care. Sept 4, 2012.
9. Sexaur, A. “Patterns of Hospice Use in Patients Dying From Hematologic Malignancies”. J Palliat Med. 2014 Feb 1; 17(2): 195–199.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3997144/

Resources

1. Gawande, Atul. Being Mortal. 2014.
2. Butler, Katy. Knocking On Heaven’s Door. 2013
3. Compassion and Choices https://www.compassionandchoices.org/
4. How to Die in Oregon (2011) – award winning documentaryhttp://howtodieinoregon.com/
5. http://www.economist.com/news/leader s/21607854-most-people-western-world-favour-assisted-suicide-law-should-reflect-their
6. Martin, B. Euthanasia tactics: patterns of injustice and outragehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3685696/