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Counselor Assisted End-of-Life Decision Making

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Presentation on theme: "Counselor Assisted End-of-Life Decision Making"— Presentation transcript:

1 Counselor Assisted End-of-Life Decision Making
Rick Halstead and Andreanna McKinzie University of Saint Joseph West Hartford, CT

2 Objectives Goal: Foster discussion with and among participants.
Introduce the framing of counselors’ role associated with end- of-life decisions. Address some of the social context elements. Provide a model for classifying end-of-life decisions. Suggest aspects of this work with which counselors should be familiar. Goal: Foster discussion with and among participants.

3 The More Obvious Fundamentals
Research in the field of health counseling supports providing interventions for persons suffering with life threatening and debilitating conditions. Doing so has been shown to positively affect the physical and mental health of patients (Dwyer, Deshields, & Nanna, 2012; Brown, 1997) The limitations of medical treatment to restore full, or even minimal capacity in some cases, have lead some individuals to opt for death as opposed to living out a life that holds little quality or any prospect for improved health (Kasl-Godley, 2014; Farrugia, 1993).

4 Practice Challenges Working with this population brings the counselor face to face with clients and family members who must cope with the difficult issues associated with making very complex decisions sometimes well in advance of an impending death. Counselors working in this area have increasingly become involved in assisting clients in the process of making end-of-life decisions that involve various forms of euthanasia as they attend to clients on a continuum of disease (Kasl- Godley, et al. 2014; Hadjistavropoulos, 1996). It is, therefore, important that counselors clarify their own values and beliefs relative to their professional responsibilities so they can focus attention appropriately on the client and not on their own need to control the counseling process or the decision outcome (Corey, Corey & Callahan, 2014).

5 A Recent Treatment vs Death Example
Brittany Maynard, a terminally ill 29-year-old spent her final days advocating for death-with-dignity laws. She was diagnosed early in 2014 with a stage 4 glioblastoma multiforme (GBM) – a malignant brain tumor and given six months to live. She gained notoriety by announcing that she planned to die on November 1st 2014 in her home in Portland, Oregon by taking a fatal dose of barbiturates, prescribed to her by her Physician, when her suffering became too great.

6 Real Life and Death Example from the Headlines
“I don’t want to die but I am dying. My cancer is going to kill me, and it’s a terrible, terrible way to die. So to be able to die with my family with me, to have control over my own mind, which I would stand to lose, to go with dignity is less terrifying.” Brittany Maynard (For those who have a deeper interest may wish to read in the area of Terror Management Theory)

7 Oregon Death With Dignity Act by the Numbers

8 Oregon’s DWDA by the Numbers 2015
In 2014, 155 prescriptions for lethal dose of barbiturates were written for people under the provisions of the DWDA and 105 people died from ingesting the substance prescribed. Prevalence statistics show that the DWDA accounted for 3.1 deaths per 100,00o in Oregon for the year 2014. Since ,327 patients filled DWDA prescriptions and 859 patients (64%) ended their lives with the prescribed substance. These numbers make it clear that there are at least two major decision points individuals engage in relative to the DWDA. Frist, they must decided to get a Rx script filled and second, they must decide to actually ingest the substance to bring an end to their lives and their suffering. It is important to understand the nature of these decisions.

9 Oregon DWDA by the Numbers 2015
The median age of the DWDA deaths during 2014, was 72 years. 95% of the decedents were Caucasian and well-educated (Bac. Degree or higher) The largest group of patients had cancer, the next largest group were individuals with amyotrophic lateral sclerosis (ALS) The three most frequently mentioned end-of-life concerns were: loss of autonomy (91.4%), inability to enjoy life (86.7%) loss of dignity (71.4%). Three of the 105 DWDA patients who died during 2014were referred for formal psychiatric or psychological evaluation. This suggests that most individuals did not come to their decision to hasten death as a result of a psychiatric disorder.

10 DWDA Laws Passed and Introduced
Oregon, Washington, and Vermont currently have DWD statues in place. As of March 7th 2015, doctor-prescribed suicide bills have been introduced in 17 states. They are: Alaska Massachusetts California Missouri Colorado Montana Connecticut New York District of Columbia Oklahoma Iowa Rhode Island Kansas Utah Maryland Wisconsin Wyoming

11 The Dimensions of Euthanasia
Euthanasia, is typically defined as the act of putting to death a person suffering from an incurable condition or disease (Albright & Hazler, 1995). It, therefore, often evokes strong emotion and conflicting values (Farrugia, 1993). The word euthanasia is derived from the Greek roots "eu" meaning well or good, and "thantos" meaning death. Taken together, euthanasia literally means a "good death."

12 The Dimensions of Euthanasia
Lester (1996) suggested that the good death is one that comes at a time when the patient and family members are psychologically at peace with the event (sometimes a challenge to have everyone on the same page). Nonetheless death can happen naturally or it can be hastened by either taking direct action or withholding action. Euthanasia or the concept of a “good death,” then, provides a vehicle by which end-of-life decisions can be classified. It is important, therefore, to understand the specific dimensions for this classification system.

13 The Dimensions of Euthanasia
Active vs Passive Dimension Active Euthanasia - a deliberate action that has the purpose of intentionally ending a person's life to prevent further suffering. Examples: a) Bringing on a sooner than normal death by taking a prescribed substances that will end one’s life, b) removing life support equipment, etc.

14 The Dimensions of Euthanasia
Passive Euthanasia - allowing a person to die by means of withholding medical treatment or procedures that might prolong life. Examples: a) Not providing intravenous hydration or tube feeding, b) following a do not resuscitate (DNR) order that directs medical personnel to withhold all treatment in the event of a life threatening occurrence, etc.

15 Euthanasia and Personal Choice
Personal Choice Dimension Voluntary - A voluntary role is one where a competent individual, facing certain death or a prolonged and progressively debilitating illness, decides under what conditions measures should be taken to bring about an appropriately timed death. Example: a client who writes out or verbally states his or her own advanced directives regarding the extent of medical interventions desired under various circumstances

16 Euthanasia and Personal Choice
Involuntary - An involuntary role is one where the individual has no input into the decision-making process regarding the actions taken that will result in the patient's death or prolonged life. Decisions are made by someone other than the patient. Example: situations where the family is faced with decisions regarding either an infant, a young child with a futile prognosis, or an adult who is deemed to be incompetent, unconscious or in a persistent vegetative state and without advance directives. These decisions are made in consultation with physicians, nurses, and in some cases mental health professionals and members of the clergy.

17 Euthanasia Decision Matrix
If one thinks about the active - passive and personal choice dimensions together, it is possible to construct a simple 2x2 table where these dimensions interact with each other. Let’s take a look!!

18 Euthanasia Decisions Matrix
Voluntary Involuntary Direct actions taken, with the patient's informed consent, to assist in ending that person's life (e.g. physician-assisted suicide or facilitated suicide). Direct actions taken, without the patient's informed consent, to end that person's life (e.g. removal of life support equipment for an individual who is unresponsive). Active Following advanced directives, established by the patient to allow that person to die (e.g. DNR order, withhold treatment such as dialysis, not providing tube feeding, not providing IV hydration). Allowing a patient to die without advance directives by not exercising extraordinary efforts Passive

19 End-of-Life Decisions and Social Contexts
Although both life and death are biologically-based states, the meaning attached to each exist within social contexts. Various stakeholders hold a vested interests in such decisions and as a result have try to impose their position on others. In the United States active and passive forms of euthanasia are regularly practiced and accepted by many as reasonable options when difficult end-of-life decisions must be made.

20 End-of-Life Decisions and Social Contexts
It is, however, the Active/Voluntary quadrant of the model, where a physician aided death is in play, that draws the most attention and is the most contentious. In Connecticut right now, two organizations have squared off in an attempt to frame the debate. Both have valid arguments and both present the extreme ends of the continuum to advance their position in the political process. “My Life. My Death. My Choice.” “Don’t Jump. Think Twice”

21 End-of-Life Decisions and Social Contexts
Active - Voluntary forms of euthanasia are illegal in some U.S. States. Physician aid in dying (PAD), or assisted suicide, is legal in the states of Oregon (1995), Washington (2008), and Vermont (2013). The key difference between physician assisted suicide and physician aid in dying is based on who administers the lethal substance dose – the physician or the patient.

22 End-of-Life Decisions and Social Contexts
The most helpful and objective resource (according to me) on this issue is the Patient’s Rights Council The Patients Rights Council is committed to the principle that you have the right to know all the facts about the critical issues of life, death, and assisted suicide. Few issues are as important as the compassionate treatment and care for those who are most vulnerable. Our primary responsibility is to offer understanding and practical support to those who are facing critical situations for themselves or a loved one. Our second responsibility is to provide the public with rational, factual information about the results of doctor-prescribed suicide and euthanasia.

23 End-of-Life Decisions and Professional Ethics
The latest ACA Code of Ethics (2014), addresses the issue of confidentiality under Section B subsection 2.b. “Confidentiality Regarding End-of-Life Decisions - Counselors who provide services to terminally ill individuals who are considering hastening their own deaths have the option to maintain confidentiality, depending on applicable laws and the specific circumstances of the situation and after seeking consultation or supervision from appropriate professional and legal parties.”

24 End-of-Life Decisions and Legal Dimensions of Practice
“. . . depending on applicable laws” - It would be important to know what laws are applicable. “. . . after seeking consultation or supervision from appropriate professional and legal parties.” - It would be important that those with whom you are consulting or receiving clinical supervision know what laws are applicable. Let’s take a look at some state statues to see what is at risk.

25 End-of-Life Decisions and State Statutes
Cal. Pen. Code § 401 Every person who deliberately aids, or advises, or encourages another to commit suicide, is guilty of a felony. California A person commits the offense of manslaughter if the person intentionally causes another person to commit suicide. Hawaii Haw. Rev. Stat. § (1) (b) The state does not recognize common law and does not have a statute regarding assisted suicide. Utah’s Advance Health Care Directive Act states that it “does not authorize mercy killing, assisted suicide or euthanasia…” [Utah Code § 75-2a-122 (2)] Utah Undetermined

26 Implications for Counselors
Must know what laws are applicable in your particular state. Please download state laws from my website. Have access to appropriate supervision/consultation Become as familiar as possible about the progression of the client’s illness and the types of physical challenges that will confront the client over the near and longer term Learn as much as you can about the members of the client’s social support system and their views on end-of- life decisions. When a system is placed under stress long standing family dynamics are sure to emerge.

27 Implications for Counselors
Must be able to work with all issues associated with fear of death, loss of control, anticipatory grief, religious and spiritual beliefs, and the overall wishes of the client. Develop a network of professionals with whom to work (e.g. nurses, social workers, physicians, elder law attorneys, Hospice organizations, and clergy).

28 Implications for Counselors
Establish a working knowledge of the important documents that a client should have in place regardless of any end-of-life decisions (e.g. final letters to loved ones, a living will, health proxy, durable power of attorney, a will or trust for estate distribution, and insurance documents). Be ready to assist family members with coming to terms with the wishes of the client. An impending death of a family member can evoke a variety of feelings and sometimes conflict between family members.

29 Implications for Counselors
Offer follow-up support for survivors once their loved one has died. It is important to note that the client’s right to privacy does not end when they die – so obtaining a release of information (and address limitations to information that can be released) from the client prior to death is important for this follow-up work with loved ones.

30 Introductory not and Exhaustive Exploration of End or Life Decisions
This presentation is intended as an introductory overview of the issues that counselors face in working with clients who are making end-of-life decisions. This is work that challenges one to address personal, medical, legal, and systemic family issues. One must, therefore, be prepared and have a working knowledge of, and facility with, a variety of important areas of clinical practice. Getting clear on your own beliefs, feelings, and values is an important first step.

31 References American Counseling Association. (2005). Code of Ethics and Standards of Practice. Alexandria, VA: Author. American Counseling Association. (2014). Code of Ethics and Standards of Practice. Alexandria, VA: Author. Brown, A.S. (1997). Counseling the catastrophically ill: An expanding field. Dialog, Spring, Corey, G., Corey, M.S., & Callanan, P. (2014). Issues and ethics in the helping professions. Pacific Grove, CA: Brooks/Cole. Dwyer, M., Deshields, T., Nanna, S. (2012). Death is a part of life: Considerations for the natural death of a therapy patient. Professional Psychology: Research and Practice, Vol. 43, Issue 2 Farrugia, D. (1993). Exploring the counselor’s role in ‘right to die’ decisions. Counseling and Values, 37(1), Hadjistavropoulos, T. (1996). The systematic application of ethical codes in the counseling of persons who are considering euthanasia. Journal of Social Issues, 52(2),

32 References Lester, D. (1996). Psychological issues in euthanasia, suicide, and assisted suicide. Journal of Social Issues, 52(2), 51-62. Kasl-Godley, J., King, D., Quill, T. (2014). Opportunities for psychologists in palliative care: Working with patients and families across the disease continuum. American Psychologist, Vol 69(4), 364 – 376. Lester, D. (1996). Psychological issues in euthanasia, suicide, and assisted suicide. Journal of Social Issues, 52(2), Oregon Death with Dignity Act – graph source:

33 Conversation and Discussion

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