Hope, Despair and the Right to Die with Dignity 101

pablo 3

I very tentatively and intentionally watched Anthony Bourdain’s PARTS UNKNOWN SEASON 10 (CNN).

Bourdain is an unwilling participant and reticently, sarcastically and often in his caustic rapid fire spitted out, “… what do you want to see?”

Waffle House fills that deep homing context and Bourdain proves it. He’s satisfied downing a pecan waffle at Waffle House with a 5 star chef. It’s followed by a t-bone and fried eggs, spearing and breaking the soft yellow orange egg yolks dripping from the toast onto the platter with hashed browns. He says one word in Japanese to the guest chef that translates into, “I’ll suck your cock for that (porkchop)” and the chef and Bourdain fall into hysterics.

Fun aside Bourdain says at the top of 10 about believing in hope over despair and I get the need to lie about one’s belief in hope when you actually don’t trust that hope will stay with you (anymore)You can’t bullshit a bullshitter, friend.

To be alone

It is of a color that

Cannot be named:

This mountain where cedars rise

Into the autumn dusk

[12th Century Poet, Jakuren]

My girlfriend asked me a few days after the Kate Spade and Anthony Bourdain inundation and my comments here and there, filled with thoughts of death, dying, despair and a total acceptance of living life on life’s terms’ meanings to me. “Are you doing ok tonight?” she asked me when I laid in bed, my voice low and we were whispering together quietly now, again, in ritual and in an easy beat. I said, “… you mean, am I thinking of suicide?” and I knew full well that only I could see my face in bed, under the bed sheet. It was a hot Atlanta June night and I wasn’t smiling and I just laid in bed in the dark listening to the quiet whirring of the fan overhead. Thinking.

“No, I’m not,” I whispered quietly and I went on to describe that because I forensically and behaviorally am talky to the point of being rude while in my own parts of despair, I often resist stubbornly, reaching in the dark and groping, working to be socially appropriate. 

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“But it is always a question whether I wish to avoid these glooms. . .  These 9 weeks give one a plunge into deep waters… One goes down into the well & nothing protects one from the assault of truth.”

[Virginia Woolf]

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Tower 1, Acrylic on Canvas (c) Jen Padron Imagery 2018, Atlanta, Georgia

Completing is one’s inherent truth to living a life that is fully cognizent of one’s mortality and living it fearlessly of death or of dying in this physical body.

Dying a good death is, “… tangent to reason and consideration and is almost always… (and) seemingly best way to end (the) pain, the futility, the voices, or hopelessness… decisions about suicide are not fleeting thoughts than can be willed away in deference to the best interest of others. Suicide wells up from cumulative anguish or is hastened by impulse,” (Jamison, K.R., 1999).

This opting-out has greater permanence because Bourdain shares death with us so publically. My fascination with death and dying has to do with my own experiences of trauma, of loss, of near deaths, of seeing people die, of holding them near and dear with the death knoll morphine drip (ICU) ending the writhing pain from invasive cancers of the body, mind and spirit.

I see that blank lie in the eyes of many of my professional Peers, Colleagues, Leaders. I’ve shared drinks and listened to birds singing at 4 AM with the sun not too far on its’ way, talking smack and ingesting anything to abate my own numbness. I’ve sat in cars listening to, “… I’m ready to go” uttered a colleague who remains a national suicide prevention expert, an innovator and leader but also painfully, a survivor lover from a long gone love and it comes out barely, quietly as a whisper.

I get it. The national Peer communities direly require all supports to sustain physically, well and to grow whole. I care for longevity in sum.

The uneasiness, the disruption, the slap in your face, the quick right to the side of your cheek will make you bleed and sweat and hurt when life happens. Discern the greater good for how you live, truly. “The meanings of life aren’t inherited. What is inherited is the mandate to make meanings of life by how we live. The endings of life give life’s meanings a chance to show. The beginning of the end of our order, our way, is now in view. This isn’t punishment, any more than dying is a punishment for being born, ” (Jenkinson, S., 2017). For Bourdain, “… having a conscience (now) is a grief-soaked proposition,” and “… Dying is active. Dying is now what happens to you. Dying what is what you do. We should be able to tell the difference between dying and being killed,” (Jenkinson, S., 2018).

You see things which you cannot unsee. Many deaths and many times later, I remain drawn to trying to make my peace with my own death and dying, an unforeseen misnomer as I sit in my mid 50s struggling to regain ground with daily physical beat-downs in my 1st year teaching in a Title I impoverished Central Georgia high school.

We will not romanticize. We must not sentimentalize. We must see with clear and bright eyes. We must be astonished when the truth of loveliness or atrocious a reality as inevitable as our walk is quietly moving on, really.

JANE: Did I hear you say commit death?

PILKINGS: Obviously he means murder.

JANE: You mean a ritual murder?

PILKINGS: Must be. You think you’ve stamped it all out but it’s always lurking under the surface somewhere.

Wole Soyinka, Death and the king’s horseman, 1975

 

So it’s true, when all is said and done, grief is the price we pay for love. Sometimes you want to say, “I love you, but…”

Erich Seagal, Love Story, (1970)

pablo

Listening to others, and considering well what they say,

Pausing, searching, receiving, contemplating,

Gently, but with undeniable will, divesting myself of the holds that would hold me.

I inhale great draughts of space;

The east and the west are mine, and the north and the south are mine.

Walt Whitman, Leaves of Grass (1855)

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Destination Dignity Summit 16 | The Carter Center | Monday, August 15

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The Carter Center, Atlanta August 12, 2016

 

Destination Dignity Inaugural Summit: August 15, 2016 The Carter Center – Atlanta, Georgia #DDSummit16; Call in * Dial 1-866-398-2885 (USA Toll Free) Enter Code: 851-630-6835#

AGENDA Goals:

(A) To convene leadership across stakeholder groups into dialogue to clarify and galvanize a collective national agenda for change grounded on social justice, dignity and recovery, and

(B) to advance/ refine directions for a national stigma/discrimination reduction program that supports such directions. Summit

Objectives:

1. Consolidate Destination Dignity collective action framework

2. Identify functional intersections between prevention, health equity, public & institutional stigma

3. Create draft domains and indicators for a US national Mental/Behavioral health strategy 4. Envision, refine, expand Destination Dignity Theory of Change

Program for the Day 9:00 Gather & Networking (Coffee and snacks provided)

9:30 Welcome: Destination Dignity Strategy Circle (10) Why And Why Now; Rebecca Palpant-Shimkets (10) Charge for the day: Collective Mind Map Framework (Vega) (15) Flash Introductions; Debbie Plotnick (20) Flipping the Script to Recovery– The Destination Dignity! Project: Eduardo Vega

10:30 Seeing the Big Picture: National Strategies, Rights & Recovery, Health Equity and Social Justice Devorah Kestel; Glenda Wrenn; Mark Salzer; Michael Pietrus

11:25 Break/Transition to Workgroups

11:35 Work Session A: Neuroplasticity – What will it look like when we get there?

12:50-1:30 Break and Working Lunch: Feedback from Work Group Session I

1:30 Afternoon Session Convene and Focus

1:40 The Fulcrum of Change: Structural Stigma, Cultural Variability and National SDR Programs Palpant Shimkets, Pietrus, Bernice Pescosolido, Ginger Lerner-Wren, Larry Yang 2:40 Break -Transition to Workgroups

2:50 Work Session B: Spreading Activation: an SDR Theory of Change for America

4:05 Lever and Fulcrum: Consolidating goals and commitments 4:25 Appreciation and Close

4:30 Adjourn Special thanks to the Carter Center Mental Health Program and to Summit Sponsors:

The Horror, The Horror

Written by Amanda Barnabe and Jen M. Padron

old empty room by barnabe
Old Room, Photo Credit: Amanda Barnabe, 2015

The first line of treatment in US psychiatric care is the prescription of psychotropic medications to an effected individual exhibiting mental diversity symptomology entailing behavioral and/or physical medically descriptive treatment.

The symptoms and prescribed diagnosis, according to the Diagnostic Statistical Manual’s (DSM-5, 2016) symptomology of “Serious Mental Illness” (SMI) includes anxiety or panic disorder(s), behavioral and mood disorder(s) with the more complex or complicated issues being major depression and the bipolar or schizophrenia spectrum disorders.  The result then, is a dire public health crisis. Suicide completion numbers worldwide today tragically occur every 40 seconds[1] and injury accounts for 30-40% of excess mortality, where 60% of premature deaths in persons with a diagnosis of schizophrenia are due to medical conditions such as cardiovascular, pulmonary and infectious diseases[2]. Compared with adults without diagnosed mental illness issues, people with SMIhave higher rates of chronic disease, heart disease, seizure conditions, hypertension, diabetes, and obesity.

Physical health problems are a major issue among individuals living with a psychiatric label.  Nearly half (45%) of all individuals living with any mental disorder have two or more debilitating physical disorders further lowering their quality of life and leading to a significantly high rate of comorbid physical issues[3].

Physical co-morbidities is the leading reason why people with SMI are dying 25 years earlier than the general population[4]. There is a higher frequency of multiple general medical conditions that more than double the rate of premature deaths from these conditions[5].

Loss of life expectancies in the United States for depression, bipolar, and schizophrenia has lowered total life expectancy by 12 – 25 years as compared to individuals not in the community public mental health system[6].  According to the Substance Abuse and Mental Health Services Administration[7] and NASMHPD[8] individuals living with a diagnosed SMI, limited to receipt of current public mental health care are dying on average 25 years nationwide earlier than those receiving private care for mental illness. Forty-six (46) years ago, in 1967, 1:3 American adults filled a prescription for a “psychoactive” medication, with total sales of this family of drugs reaching $692 million[9].

In the US, psychotropics are broadly prescribed, the least regulated, and fall in the fastest, biggest-selling class of drugs nationally. In 2010, $16.1 billion was spent on antipsychotics in the US, to treat depression, bipolar and schizophrenia.  $11.6 billion was spent on antidepressants, while $7.2 billion for the treatment for ADHD, according to IMS Health, which tracks prescription drug sales (Wall Street Journal, 2011). MH treatment spending between 2009 and 2020 estimates showed a percent contribution of each provider type to the eagerly anticipated $91 billion increase in the treatment for the SMI nationwide. The International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) refers to SMI as “mental disorders” (i.e., codes in sections 290 through 319)[10].

A medically, clinically necessary diagnosis substantiating the use of psychotropic medication dosing is geared to control and manage exhibited DSM-5 symptomology popularized and normalized by the American Psychiatric Association, the American Medical Association, National Association of Social Work and the American Psychological Association. The US SMHA expenditures for mental health treatment alone was $38,098.64 in the millions (2013) which included jails, prisons, MH/SUD facilities, but not did not include children’s services nationwide[11]. 35.5% percent of all US Social Security Disability Insurance (SSDI) beneficiaries live with such a diagnosis[12]. The SSA 2012 numbers of 10,088,739 SSDI beneficiaries nearly doubled from 5,044,388 since 1995.

Kaiser Health Foundation of State Effected SMHA:

Using IMS data for 2012 as a starting point, baseline expenditures representing $/spent for SMI prescribed and purchased psychotropics are predicted using the formula (described earlier):

Δ expenditures = Δ P * Δ Q

where Δ means growth represented by 1 plus the percent change (example: 5.1 percent growth = 1.051), P represents price of services, and Q represents quantity of services. Spending was projected at the molecular level for those products expected to lose patent protection or at the therapeutic class level for all classes where the generic share was higher than 70 percent.

“For quantity of prescriptions, growth in the number of prescriptions for each therapeutic class was projected using the “target growth” technique described in the baseline projections section above. This method uses average growth over 2009–2012 and, in one case, over the longer time period of 2002–2012 to establish the growth rate at the end of the period. An assumption that the growth in volume will change gradually from 2012 to 2020 to hit that target growth rate was used.  In addition, patent expiration dates were used to determine points in time when branded medicines lost market exclusivity and would lose volume. The assumption was also made that most consumers would switch from a branded to the generic version, with 70 percent of the switching occurring in the first year after patent expiration and 95 percent in the second year after patent expiration,” (HHS Publication No. SMA-14-4883, 2014).

Source:  Substance Abuse and Mental Health Services Administration. Projections of National Expenditures for Treatment of Mental and Substance Use Disorders, 2010–2020. HHS Publication No. SMA-14-4883. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014[13].

Social stigma for diagnosis and living with an SMI increases triggers and stressors to an already vulnerable, disenfranchised, marginalized and impoverished population of citizens living with perceived mental illness and physical comorbidity. LGBQT individuals are 2 or more times more likely than heterosexual individuals to have a mental health condition. 11% of trans individuals reported being denied care by mental health clinics due to bias or discrimination. Lesbian, gay, bisexual, gender queer, trans and questioning youth are 2 to 3 times more likely to attempt suicide than heterosexual youth.

Critical Issues Faced by Multicultural Communities[14]:

  • Culturally insensitive health care system
  • Higher levels of stigma
  • Language barriers
  • Lower rates of health insurance
  • Less access to treatment
  • Less likely to receive treatment
  • Poorer quality of care
  • Racism, bias, homophobia or discrimination in treatment settings

Trending study on the association of ill health and SMI includes analysis of physical wellness measures and Quality of Life (QoL).  QoL has emerged to be an “influential outcome measure in people with psychosis”[15] related most significantly to schizophrenia and major depression.  There is a significant relationship between physical health, overall subjective health levels and QoL in pervadive research between illness-related factors with chronic mental health disorders, substance abuse/addiction disorders and comorbidities.  Psychiatric and comorbidities ill-health symptoms diminish QoL[16]. Preventable physical health conditions rise out of the lack of exercise due to the high rate of tobacco smoking, poor nutrition and prescribed psychotropic medication side effects, giving way to cardiovascular disease, raised sugar levels (Type 2 diabetes), hypertension, and liver disease[17].

The physical health of individuals living with a psychiatric and/or substance abuse disorder and comorbidity is currently inordinately neglected in treatment which requires an Integrated care solution. Co-locating behavioral and physical primary care providers to deliver a balanced, whole regimen in assessment, treatment plan and a consistent continuum of care[18] in a public/private health care environment.  Drake, et al., (1998) support an Integrated behavioral health and substance abuse treatment in an assertive community treatment (ACT) approach for patients living with a psychiatric and substance abuse/addiction dual disorder based upon clinical and epidemiological data indicating that the rate of the SMI population with comorbidity are significantly higher than in the general population[19]. Reducing the severity of needs for individuals living with an SMI and substance abuse/addiction disorder benefits ensures a higher experienced personal QoL for recipients of public community health services[20]. Predictors of higher QoL stem from lowered needs, having one’s personal and social supports in place, having a higher personal feeling of worth, less substance abuse/addiction disorders and having housing in place increases self-worth and predicts a favorable long-term outcome in schizophrenia with better daily and social functioning[21].

The absence and lowered levels of personal needs, having a sense of daily hope, lessened social exclusion, greater safety to self and a measureable, identified personal benefit to living are directly involved with greater personal QoL[22]showing value in ensuring a higher QoL in this disenfranchised population.  It has been argued that “… fostering hope and positive self-concept should be central components of recovery-oriented services and interventions…”[23] and is strongly linked to individuals experiencing increased QoL. An effective early intervention method to improving the physical health of adults with SMI to achieve higher overall QoL’s and meaningful Physical Health Quality of Life (PHQoL) is to develop and implement effective, culturally attune and sustainable lifestyle interventions[24].

In the scientific literature, there have been several reviews of randomized controlled trials (RCTs) on Peer providers (Certified Peer Specialist, Forensic Peer Recovery Specialist, Recovery Coach and Community Health Worker) for mental health services. Controlled studies substituting people with lived experience for providers of direct or adjunctive mental health services generally find the same impact on service user outcomes as other mental health providers, with improved treatment outcomes in some instances with no additional risk of harm to service users[25]. There is also theoretical literature which addresses the challenges and benefits of hiring consumer providers in mental health agencies[26] and a long history of activist writings on the importance of leadership, community-building, and mutual support among people with lived experience of the mental health system[27].

As of February 2016, 43 States, two Territories (Guam and Puerto Rico), the District of Columbia and the Veterans Administration system have established programs to train and certify Peer specialists is in process of developing and/or implementing a program. Appalachia Consulting[28] contracted proprietary CPS curricula is used in 23 states. Recovery Resources[29] free CPS curricula is used broadly by the Department of Veterans Affairs and a limited number of states. Recovery Innovations / Recovery Opportunities (Ashcraft, 2015) contracted and proprietary CPS curricula is also broadly purchased and contractually provided.

Given the groundswell of perspectives that endorse the growing prominence and importance of Peer support in mental health and human services, it is essential that we document evidence to examine the impact the peer support workforce has on access to care, cost of services, participant outcomes, and system and provider outcomes[30]. Included in this must be rigorous research on the particular approaches and philosophies of peer support workers that make them an addition rather than a substitute for clinical and social care disciplines[31].

The real horror is that Western “medicines” were “supposed to make one feel better” and is juxtaposed with the overwhelming intention that psychotropics are chemical restraints designed to alleviate psychiatric symptomology. It is in the authors’ opinion that mental illness and the disease model rarely takes into consideration cultural bias, white privilege, trauma, re-traumatization or hate ofthe other. For the mentally ill, psychotropic medications hold the illusion of controlling (mal)behavior in that the individual is molded to meet public acceptance levels of socially accepted cultural mores, inherently white, male, patriarchal, heterosexual Judeo-Christian based and is hierarchical.

The caveat then, is that psychotropics are often not prescribed to improve apatient’s QoL alone, but rather, to shape neat predictable cookie cutter shapes of people with shared life experience or to fit antiquated sociocultural stereotype and meet appropriate biased social expectation and roles of compliance.

 

Citations

[1] World Health Organization (2016). Retrieved April 11, 2016http://www.befrienders.org/suicide-statistics

[2] National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council Report, 2006

[3] Harvard Mental Health Letter, (2003); NASMHPD, (2006); Parks, Svendsen, Singer, Foti, (2006).

[4] Fricks, (2012); Mental Health America, (2010); National Alliance on Mental Illness, (2011).

[5] Kelly, Boggs, and Conley, 2007; Mauer, 2006; Parks et al., 2006; Sokal et al., 2004; Saha, Chant, and McGrath, 2007; Laursen et al., 2013).

[6] Robert WhitakerAnatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, 2010.

[7] National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council Report, 2006.

[8] Ibid.

[9] Robert WhitakerAnatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, 2010.

[10] Substance Abuse and Mental Health Services Administration. Projections of National Expenditures for Treatment of Mental and Substance Use Disorders, 2010–2020. HHS Publication No. SMA-14-4883. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014.

[11] National Association of State Mental Health Program Directors Research Institute, Inc. (NRI), (2013) http://www.nri-incdata.org/

[12] Annual Statistical Report on the Social Security Disability Insurance Program

[13] SAMHSA, 1996 (Coffey et al., 2000; Levit et al., 2013; Levit, Kassed, Coffey, Mark, McKusick, et al., 2008; Levit, Kassed, Coffey, Mark, Stranges, et al., 2008; Mark et al., 2000; Mark et al., 2007; Mark and Coffey, 2004; Mark, Coffey, McKusick, et al., 2005; Mark, Coffey, Vandivort-Warren, et al., 2005; Mark, Levit, Vandivort-Warren, Buck, and Coffey, 2011; Mark, McKusick, King, Harwood, and Genuardi, 1998; McKusick et al., 1998; SAMHSA, 2010; SAMHSA, 2013).

[14] National Alliance on Mental Illness (NAMI) (2016). Cited statistics provided by the National Institute of Mental Health. http://www.nimh.nih.gov, the Substance Abuse and Mental Health Services Administration, New Evidence Regarding Racial and Ethnic Disparities in Mental Health and Injustice at every Turn: A Report of the National Transgender Discrimination Survey.

[15] Theodore, K., et al., 2012, p. 545

[16] Parks et al., (2006).

[17] Must, Spadano, Coakley, Field, Colditz, & Dietz, (1999).

[18] Robson & Keen, (2012).

[19] Cuffel, (1996).

[20] Fleury, M., et al, (2013).

[21] Karow, A., et al., (2014).

[22] Fleury, M., et al, (2013).

[23] Hodgekins & Fowler, 2010; Theodore, et al., (2012), p. 549.

[24] Fricks, L., (2014).

[25] Pitt, V., Lowe, D., Hill, S., Prictor, M., Hetrick, S. E., Ryan, R., & Berends, L., 2013; Chinman, M., George, P., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Swift, A., & Delphin-Rittmon, M. E., (2014).

[26] Davidson et al., (2006); NASMHPD, (2014).

[27] Chamberlin, (1978); Morrison, (2013).

[28] Fricks & Powell, (2015).

[29] Harrington, S., (2015)

[30] Hardin & Padron, (2014).

[31] Chinman, M., George, P., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Swift, A., & Delphin-Rittmon, M. E., (2014).

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