I want to Die a Free man : The Psycho-Social-Spiritual Issues Surrounding Death in the Prison System

Transcription

1 I want to Die a Free man : The Psycho-Social-Spiritual Issues Surrounding Death in the Prison System Loretta Lee Grumbles, MD Associate Professor of Medicine Director of Palliative Medicine Division Department of Internal Medicine Department of Internal Medicine

2 Disclaimer I have no commercial or financial disclosures to disclose.

3 Objectives 1. Describe what dying looks like in prison across the US. 2. Compare and contrast psychological, social, and spiritual suffering between free world and incarcerated hospice patients. 3. Introduce the fear and mistrust obstacles that over shadow the end of life decision making in the prison system. 4. Listen to a description of the TDCJ and the UTMB collaborative effort to optimize a challenging system.

4 NPHA: Prison Hospice Prison hospice is a holistic approach to medical treatment of terminally ill inmates. It seeks to implement the principles of palliative care in a variety of health care settings under correctional management. In cases where the prognosis presents the option of either continuing curative efforts or beginning palliative treatment, techniques of comfort care may proceed in tandem with curative measures, at least until such time as curative efforts are contraindicated.

5 NPHA: Prison Hospice Corrections officials are constrained by the demands of their mission of security and public safety. Final decisions about policies and procedures necessarily lie with corrections personnel; the role of hospice professionals is to provide input about the principles and practice of palliative care. The problem of precisely where the boundaries of compromise and mutual accommodation should lie must be worked out cooperatively. Certain principles will be non-negotiable; others will be subject to adjustment or gradual implementation.

6 NPHA: Prison Hospice Prison hospice programs, since they do not rely on Medicare rules and funding have the opportunity to respond with greater flexibility to inmate needs.

7 NPHA: Prison Hospice The family is defined by the patient, and this family may include persons inside and outside the prison not related by blood or legal tie. Usual correctional policy, however, is more restrictive in defining family as parents, siblings, children, and spouses. For prison hospice patients, visitation policies may appropriately be expanded to accommodate the patient s preference when the choice of "family" includes fellow inmates of long acquaintance.

8 NPHA: Prison Hospice To code or not to code; that is the question.

9 NPHA: Prison Hospice Locale for Service: Geographically located hospice unit within a prison infirmary or medical center. Virtual hospice beds within a prison medical center. General population as long as functionality is adequate.

10 Prison Hospice Correctional management owned and operated with: Correctional management employees Community contracted employees Contracted community hospice

11 NPHA: Prison Hospice Community Volunteers Inmate Volunteers companionship, conversation, reading, feeding, caring for hygiene and personal grooming, writing letters, providing spiritual support, making telephone calls, and helping with movement. They may also assist the nursing staff with routine care such as turning, lifting, bathing, changing linens, and dressing

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13 What is TDCJ prison like?

14 Texas Department of Criminal Justice

15 Michael s Unit Hospice Ward

16 The most common response during the acceptance phase of the terminal inmate is

17 FEAR! Fear of dying in prison Fear of dying alone Fear of dying in pain Fear of lack of psycho-social-spiritual closure

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19 Rarely the response is This is my way out [of prison]. or This is my punishment for what I have done.

20 Medically Recommended Intensive Supervision (MRIS) Parole Many times is an impedance to acceptance.

21 Motivational interviewing Open ended questions Affirmation statements Reflective listening Summary statements

22 Sample motivational interview Dr. Grumbles: Tell me what the doctors here at Hospital Galveston have told you about your disease? (open ended question) Inmate: That I have lung cancer. Dr. Grumbles: What have the doctors explained about your cancer? (open-ended question) Inmate: It s bad. They say it s incurable, but I do not believe them. Dr. Grumbles: It takes a strong man to sit there and tell me they think the doctors are lying to you when they have control over your care. So you do not think they are telling you the truth. (Note that the punctuation is a period and my tone dips down to make a reflective statement, not a question). Inmate: NO! They are just doing the State s bidding. It would cost to much to give me the cancer medication. Dr. Grumbles: Oh you believe that you do have a terminal cancer, but that the State does not want to spend money on your cancer. Inmate: Yes or maybe no. I don t really know if the doctors would lie about a disease. It is probably terminal. Don t you guys take some type of oath not to do harm or lie?

23 Dr. Grumbles: If you trust the doctors are telling you the truth about your prognosis being terminal, why would they lie about treatments that might help you? Inmate: I know that does not make sense. But, you have to understand; you never know what to believe in prison. Dr. Grumbles: I hear you say that you have a lot of mistrust in the prison system and you are transferring that mistrust to the doctors. Inmate: Well maybe. You don t think they are lying, doc? Dr. Grumbles: I have never heard them lie before. Have you thought maybe they are telling you the truth? Inmate: Of course, I have thought about that. Dr. Grumbles: You are not sure you believe the doctors. Inmate: No. I believe that I have a terminal cancer. I just want to get a parole, so I can go to MD Anderson and get a second opinion as a free man. Dr. Grumbles: I am hearing you say being a free man is important to you. Inmate: Duh! Dr. Grumbles: Are you scared you are going to die in prison with this cancer?

24 Inmate: Absolutely. Do you really think they care if I am in horrible pain or not? Dr. Grumbles: So you are fearful that your cancer will be very painful. lots of inmates tell me they are fearful of dying in prison, dying of untreated pan, dying alone, dying before they get a chance to get out of prison or sometimes just fearing that they will die without finding true peace of mind. Are any of those things bothering you besides worried about dying in pain? Inmate: I am afraid all of them might happen to me. Dr. Grumbles: Let me summarize our conversation to make sure I am hearing and interpreting correctly what you told me. You accept that fact you do have a terminal disease and acknowledge that the doctors do not have a reason to lie to you. But, I hear a real concern has more to do with a mistrust and fear of how the prison system will treat you with this terminal cancer. (Summary statement) Inmate: Yes. You got the jest of it doctor. I want to get a fair shake like a free man would get. I want out of here to get that fair shake. Dr. Grumbles: I cannot do anything to facilitate you getting paroled, but I can assure you that I believe you will get compassionate care in the Michael s Hospice Unit. That unit is very similar to free world hospice care. Why don t you think about what we talked about today and I will come back tomorrow and we can talk again. Inmate: OK Doc. I will do that. See you tomorrow. Dr. Grumbles: Bye. See you tomorrow.

25 Telemedicine: Palliative Medicine Clinic Progressive decline in functionality or disease burden despite curative treatment Increasing or uncontrollable pain Profound fatigue or weakness with or without functional decline Increasing or uncontrollable dyspnea with or without oxygen desaturations Poor nutritional status with documented loss of greater or equal to 10% over 3 months Dementia FAST 7 score (bedridden, swallow problems/choking, loss of communication ability) Terminal or progressive irreversible disease state with recommendation to admit to hospice and inmate agrees, but Palliative Performance Scale deemed to high for TDCJ Hospice admission criteria. Terminal disease with life expectancy less than 6 months, but PPS greater than 40 requires assistance with ADL Terminal or progressive irreversible disease state with recommendation to admit to hospice, but inmate declines hospice admission Terminal or progressive irreversible disease state and no active Advanced Directives and/or no MPOAHC

26 Questions