End-of-Life Care for Individuals with Severe and Persistent Mental Illness

 This paper explores the intersection of individuals who struggle with severe and persistent mental illness (SPMI) and how palliative or end-of-life care is administered.  This exploration will also involve examining what impact this contextual intersection has on how decisions are made during end-of-life care and eligibility for medical assistance in dying (MAiD).  How much agency do individuals with severe mental health issues have regarding their health care and treatment options? Who determines the capacity of the individual to make sound decisions for their best benefit?  Are assumptions and stigmas at play in this intersection?  From the research conducted, there seems to be a hesitation among medical caregivers as to how much agency one who is afflicted with a serious mental illness can and are able to have over treatment. 

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 A number of studies and articles report that there is a higher mortality rate among those with serious mental health challenges.  Trachsel (2018) states, “…patients with severe and persistent mental illness (SPMI) have a high mortality rate and die 10 to 20 years earlier than persons in the general population.” (Trachsel, 2018). Other studies report that the reasoning for this high mortality rate is varied, ranging from unsafe living conditions, such as homelessness; lack of access to quality medical care and unhealthy behaviours. (Elie et. al, 2018)

 The complexity of this mental health issue is evident, combining legal and ethical implications of MAiD, alongside with societal stigma surrounding the capabilities of individuals who have serious mental health challenges and their ability to make medical decisions, particularly surrounding end-of-life, alongside with increased risk of developing serious physical illness.  All of this combined, produces a present day mental health issue whose resolution is anything but simple. 

 There are rare moments in one’s life where one is stripped to the core of themselves.  Their true nature and their truth.  One of those rare moments is when one faces their end-of-life.  To be there for the individual or to provide care that is anything but truthful, respectful and authentic is to diminish the humanity of the person we serve.  As professionals, there are moments the person is forgotten as symptoms are managed.  As end-of-life approaches, it is time for honesty about the type of care that can be provided, deserved and sought, for example, if MAiD is an option that one wishes to exercise, or there may be certain ways one wishes their pain symptoms to be managed.  End-of-life care, or physician assisted suicide is such a complex heated debate, I wondered how the wishes of an individual who has had serious or prolonged mental illness would be regarded by those providing care.  I advocate for the ability of those who suffer from any physical and/or mental ailments to pass away on their terms. Mandated by their wishes and beliefs, determined by them and not from another who may barely know them.

Paradigm

 The social constructivist paradigm will be utilized as this theory follows the framework that we as humans and collectively in our societies, attribute meaning to events that impact our personalities, and behaviour.  Guided by the subjective experience and the subjective response. Alderson (1998) ), in her article, “The Importance of Theories in Health Care” explains, “There is no neutral, objective perspective; whatever the origins of the pain, the experience and the observers’ responses are deeply personal. The complex meanings of pain and disease can be seen as questions or problems instead of given facts.” (Alderson, 1998)  Due to the clinical nature of end-of-life care, the positivist paradigm tend to guide the medical model that care practitioners in this field conduct their work through.  Alderson (1998) points out, “In medicine, the emphasis on specific body parts, conditions, and treatments assumes that these are universally constant, replicable facts.” (Alderson, 1998)  In other words, the world is ordered by a natural set of rules that is true for everyone.  Objectively experienced and happens regardless of how one feels or believes.  The progression of physical death can be seen through this lens.

 To discuss the intersection of  individuals who struggle with severe and prolong mental health issues and how palliative or end-of-life care is administered through strictly a positivist lens would inhibit the importance of how socially constructed perspectives around mental health effects the care that an individual receives. Through the social constructivist lens this paper aims to uncover if preconceived social perceptions underlie the positivist medical model.

Legislation

 Although The Mental Health Act plays a large part in the intersection of mental health and end-of-life care, the largest legislative piece to mental health and decisions regarding end-of-life care is The Health Care Consent Act (HCCA).  The HCCA deals with the cognitive ability of a person in understanding information about their health and treatment, and the consequences of their decision(s).  It is up to a physician to determine if an individual is competent and able to make sound decisions for themselves.  The test for capacity is set out in subsection 4(1) of the HCCA and provides that:

“A person is capable with respect to a treatment, admission to a care facility… if the person is able to understand the information that is relevant to making a decision about the treatment, admission … as the case may be, and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision.”  (Mental Health and the Law Toolkit Revised (2016))

 The question lies in how medical personnel understands and perceives mental illness in light of the patients capacity to consent.  Hirsch (2016) argues and quotes Mishna et al. (2012), “The state of being depressed, mentally ill, or suicidal with feelings of hopelessness and despair can be thought of as impeding a person’s capacity to reason, make rational decisions, and to act autonomously. However, mental illness by definition does not mean someone is irrational or incompetent.” (Hirsch, 2016).  As it stands, the power of deciding if an individual has or lacks the ability to make end-of-their life care decisions, lies with medical professionals who may or may not be well-versed in the mental health field, and would make decisions based on their perceptions rather than on actual psychiatric knowledge of the mental illness the individual is diagnosed with.

Social Implications

 It is a basic human right for each individual to live with self-agency and within an environment that is enriching, and encouraging, unfortunately that is utopist in thought.  Realistically, there are a number of factors that influence the mental health of an individual.  Alongside genetics and life choices, social determinants of health (i.e. social positioning, economic and environmental factors)  play a large part in the trajectory that a life takes.  Individuals with severe and persistent mental illness (SPMI) through no fault of their own are placed in a cycle where stigma and social determinants play a back and forth game of chicken with their health and quality of life.  In Butler and O’Brien’s (2018) article, they refer to a number of studies whose research has shown that individuals with severe and prolonged mental illness (SPMI),

“…are at increased risk of developing and dying from a life-limiting illness, and die at a younger age….at least 50% of people diagnosed with an SPMI have co-existing medical morbidities including higher rates of cardiovascular disease, infectious disease, including HIV; non-insulin-dependent diabetes mellitus; gastrointestinal disease; respiratory disease, and some forms of cancer.” (Butler & O’Brien, 2018)

 At the heart of these health disparities, lies the societal stigma that is attached to those who are afflicted with a mental health disorder.  Corrigan et. al (2014) discusses how stigma that drives stereotypes go about, “…depicting people with mental illness as being dangerous, unpredictable, responsible for their illness, or generally incompetent can lead to active discrimination, such as excluding people with these conditions from employment and social or educational opportunities.” (Corrigan, Druss, & Perlick, 2014) 

 Stigma interweaves itself with social determinants of health, producing a dangerous cat and mouse game where individuals with SPMI hesitate to seek out health care services either voluntarily as they have internalized this societal stigma or involuntarily as the societal stigma becomes the impasse to accessing quality health care services, in this case, end-of-life care. The societal stigma surrounding the decision-making capabilities of individuals with SPMI, that is embedded within the medical profession keeps quality end-of-life care at arm’s length, producing substandard care levels as the person is not the primary focus but rather their mental illness is.  Elie et al. notes “…medical specialists rarely engage SPMI patients in end-of-life care discussion for various reasons….misconception that mental illness impairs decision-making capacity.” (Elie, et al., 2018)  What is most interesting is that there is a presumption that the individual due to their mental illness is not capable of making sound health decisions for themselves.  Hirsch (2016) comments, “..mental illness by definition does not mean someone is irrational or incompetent…there is a difference between…severe long-term illness who have deliberated carefully about ending their lives and those that are temporarily impaired whose wish to die might be a symptom of treatable illness such as being actively psychotic.” (Hirsch, 2016)  At the heart of the social implications of mental health and access to end-of-life care is stigma, reducing the stigma increases quality of life, and concurrently the social determinants that one’s quality of life is determined by.  Addressing the stigma, can begin to relieve some of the barriers to health care that individuals with SPMI face. 

Historical Management

 Historically, those who had any form of mental health disorder were institutionalized and closed off from society.  Seen as either an embarrassment to family or hopeless, these individuals were ignored, those afflicted with mental illness where feared and forgotten.  With no voice to be heard on care treatment plans, these individuals were seen to be a burden on society.  Hirsch (2016), “The perception of mental illness as a flaw or weakness obstructs our ability to empathize with those living with intractable and debilitating mental health issues.” (Hirsch, 2016).

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 At the intersection of this historical treatment of those with mental disorders and the current medical concept of end-of-life care we, as a society are left with a lot of uncertainty as to how to compassionately move forward.  “Our history of mistreatment of people with mental illness also creates a taboo against assisted suicide for these populations.” (Hirsch, 2016) Society’s generalized hesitation in addressing this intersection speaks to the misconceived notions still held about mental disorders, just as historically physicians made care decisions on behalf of the individual with a mental disorder, it feels like history is repeating itself in this juncture of mental health and end-of-life care, by deeming an individual lacking capacity to make their own decisions without having the discussion with the individual and moving forward with a care treatment plan that counters the individual’s wishes based on an old misguided assumption that the individual lacks ‘capacity’.

Current Research

 Elie et. al (2018) designed a study to compare and assess patients who were either SPMI (severe and persistent mental illness) or CMI (chronic medically ill), and how they differed in their end-of-life care preferences and how comfortable they were in discussing their preferences.   What the researchers found was, “The percentage of patients supporting the use of pain medication, palliative sedation, MAiD, and artificial life support did not differ significantly between groups.” (Elie, et al., 2018)  Interestingly, SPMI patients “…were less likely to support its [MAiD] use before and after controlling for covariates….This contrasts with a controversial body of evidence suggesting that depressed and suicidal patients are more likely to support physician-assisted death and euthanasia” (Elie, et al., 2018)   What this body of research points to is that the misperception held by society that those individuals with SPMI would be more inclined to passive suicidal tendencies are falsely held.  Countering these misperceptions with scientific research may help turn the tide in the stigmatic thought that those in the SPMI population have suicidal ideation and would be inclined to choose end-of-life measures faster than the general population.  It goes to show how entrenched mental health stigma is within our culture.  As medical professionals with in-depth access to scientific knowledge, it is evident that the societal construction of mental illness has penetrated the ‘objective’ positivist mindset that the medical model prides itself to be.

 Elie et. al (2018) did note that “…further studies are needed to carefully assess the impact of prominent psychiatric and cognitive symptoms on decision-making capacity about end-of-life care in vulnerable patients.”   Studies that can further de-stigmatize this line of thinking within the general public may help to navigate the complexity of mental illness and assist in understanding  that lack of rationality, capacity to consent nor end-of-life decisions are determined by mental illness, but rather by the individual themselves separate from their disorder.

 In regards to access to and who qualifies for MAiD, this is a political, ethical and legal hot potato topic.  According to the Government of Canada website, to be eligible for MAiD, an individual needs to meet all of  the eligibility criteria, one criteria particularly stands out in relation to this paper’s topic, “…be at least 18 years old and mentally competent. This means being capable of making health care decisions for yourself.” (Medical Assistance in Dying, 2019) It was also noted that to be considered, the individual needs to, “…be in an advanced state of decline that cannot be reversed….[and]… experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable.” (Medical Assistance in Dying, 2019) This presents a quandary, if the mental disease that one suffers from affects the cognitive functioning of being considered mentally competent, how does one qualify for MAiD?   Who determines this lack of capacity?  As stated previously, individuals with SPMI seek out MAiD less than was perceived, perhaps as Trachsel et. al suggest, the answer then lies within, “An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness.” (Trachsel, Irwin, Biller-Andorno, Hoff, & Riese, 2016)

 As can be seen, individuals with SPMI and end-of-life care and decision making is a complex issue that we all will be discussing for years to come.  What is clear, further research is required, a deeper analysis of parameters surrounding the determination of capacity and consent for those with SPMI and a recognition of the stigma that pervades the medical model.

Multicultural Context

 Living in a multi-culturally diverse country such as Canada, it is important to understand the role culture plays in how mental health and end-of-life care is experienced, separately and together. Werth Jr. et. al points out that, “Although the majority culture…places great emphasis on autonomy, some cultures…place much less value on self-determination and instead emphasize collective decision-making.”   (Werth, Blevins, Toussaint, & Durham, 2012)  Within this context, the discussion this paper has had thus far on the autonomy of the individual with SPMI to choose for themselves the type of end-of-life care they would like to receive, must change to accommodate this cultural perspective.  It is important to be aware of the cultural lens that the individual lives through to ensure that their wishes are heard and understood.  Some cultures do not see mental illness the same way as western cultures, for some cultures mental illness is seen as a spiritual gift, and yet other cultures it is seen as possession of an unworldly spirit that needs to be exorcised. These perceptions shift how end of life care decisions are made. 

 Another cultural aspect to keep in mind in having these end-of-life discussions is that, “In addition, some cultures (e.g., some Native American tribes) believe that speaking of death at all, or telling the terminally ill person that she or he may die, is harmful” (Werth, Blevins, Toussaint, & Durham, 2012)  It is important to stay mindful and respectful of the space an individual occupies and how that space is filled with beliefs, values and cultural norms.

Critical Reflections

 Reducing the stigma surrounding both mental illness and decisions about end-of-life care, that includes physician assisted suicide, literally is a life or death decision.  That is not said tongue in cheek, but rather quite seriously.  First, there must be an understanding of the correlation between mental health and concurrent physical ailments, that can reduce the lifespan of the individual by 10 to 20 years.  Stigma has a serious implication and role to play in one’s life.  Lastly, the debate around assisted dying.  if that is a choice the individual makes, the role that capacity and consent has on this decision is on its own, complex in nature, but add the complexity of SPMI individuals and one has a slew of questions and uncertainty that makes medical professionals run for the hills or avoid discussions at all costs.  But is that the type of care that is deserving to an individual, we are all complex human beings with a set of beliefs, values and understandings, informed by our cultural backgrounds, and lived experiences, regardless of our mental state.

 It is also evident that the positivist skewed medical model is not sufficient enough to work with this intersection.  First of all, the objectivity of the medical model is thrown into question, the social construct of what it means to die a good death and the social construction of capacity in light of mental illness can prevent an individual to die that good death because society perceives them to be incapable of making their own decisions.  As Rentmeester (2014) comments, “we often focus too narrowly upon legal notions of competence and clinical notions of decision-making capacity and pay little attention to the patient’s actual illness experiences…recall that a person can have epistemic authority….seen as worthy of regard.” (Rentmeester, 2014) 

References

• Alderson, P. (1998, October 10). The Importance of Theories in Health Care. BMJ (Clinical Research Ed.), pp. 1007-1010. doi:10.1136/bmj.317.7164.1007
• Butler, H., & O’Brien, A. J. (2018). Access to specialist palliative care servies by people with severe and persistent mental illness: A retrospective cohort study. International Journel of Mental Health Nursing, 27, 737-746. doi:10.1111/inm.12360
• Corrigan, P. W., Druss, B. G., & Perlick, D. A. (2014). The Impact of Mental Illness Stigma on Seeking and Participating in Mental Health Care. Association for Psychological Science. Retrieved June 21, 2019, from The Impact of Mental Illness Stigma on Seeking and Participating in Mental Health Care
• Elie, D., Marino, A., Torres-Plata, S., Noohi, S., Semeniuk, T., Segal, M., . . . Rej, S. (2018, January). End-of-Life Care Preferences in Patients with Severe and Persistent Mental Illness and Chronic Medical Conditions: A Comparative Cross-Sectional Study. American Association for Geriatric Psychiatry, 26(1), 89-97. doi:https://doi.org/10.1016/j.jagp.2017.09.018
• Hirsch, J. (2016). The Wish to Die: Assisted Suicide and Mental Illness. Journal of Social Work in End-of-Life & Palliative Care, 12(3), 231-235. doi:http://dx.doe.org/10.1080/15524256.2016.1200516
• Medical Assistance in Dying. (2019, April 25). Retrieved from Government of Canada: https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html
• Mental Health and the Law Toolkit Revised (2016). (n.d.). Retrieved from Ontario Hospital Association: https://www.oha.com/Legislative%20and%20Legal%20Issues%20Documents1/OHA_Mental%20Health%20and%20the%20Law%20Toolkit%20-%20Revised%20(2016).pdf
• Rentmeester, C. A. (2014). Regarding Refusals of Physically Ill People with Mental Illnesses at the End-of-Life. International Journal of Mental Health, 73-80.
• Trachsel, M. (2018). The Ethical Importance of Assessing End-of-Life Care Preferences in Patients with Severe and Persistent Mental Illness. American Association for Geriatric Psychiatry, 98-99.
• Trachsel, M., Irwin, S., Biller-Andorno, N., Hoff, P., & Riese, F. (2016). Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits and risks. BMC Psychiatry. doi:http://doi.10.1186/s12888-016-0970-y
• Werth, J., Blevins, D., Toussaint, K., & Durham, M. (2012). The Influence of Cultural Diversity on End-of-Life Care and Decisions. American Behavioral Scientist, pp. 204-210. doi:https://doi.org/10.1177/000276402236673