Counselor Assisted End-of-Life
Decision Making
Rick Halstead
and
Andreanna McKinzie
University of Saint Joseph
West Hartford, CT
www.usj.edu/rhalstead
Objectives
• Introduce the framing of counselors’ role associated with endof-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.
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).
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 (KaslGodley, 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).
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.
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)
Oregon Death With Dignity Act by the
Numbers
180
160
140
120
100
80
60
40
20
0
1998
1999
2000
2001
2002
2003
2004
2005
Rx Writen
2006
2007
DWDA Deaths
2008
2009
2010
2011
2012
2013
2014
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 1998 - 1,327 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.
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.
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
California
Colorado
Connecticut
District of Columbia
Iowa
Kansas
Maryland
Massachusetts
Missouri
Montana
New York
Oklahoma
Rhode Island
Utah
Wisconsin
Wyoming
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."
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.
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.
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.
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
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.
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!!
Voluntary
Involuntary
Active
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).
Passive
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
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.
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.
https://www.compassionandchoices.org/
http://www.dontjump.org/
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.
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 http://www.patientsrightscouncil.org/site/
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.”
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.
California
Cal. Pen. Code § 401
Hawaii
Haw. Rev. Stat.
§ 707-702 (1) (b)
Utah
Undetermined
Every person who deliberately aids,
or advises, or encourages another to
commit suicide, is guilty of
a felony.
A person commits the offense of
manslaughter if the person
intentionally causes another person
to commit suicide.
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)]
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-oflife decisions. When a system is placed under stress long
standing family dynamics are sure to emerge.
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).
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.
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.
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.
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, 19-28.
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), 61-70.
Hadjistavropoulos, T. (1996). The systematic application of ethical codes in the counseling of persons who are
considering euthanasia. Journal of Social Issues, 52(2), 169-188.
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), 51-62.
Oregon Death with Dignity Act – graph source:
https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/y
ear17.pdf
Conversation and Discussion