Preventive Ethics - The Foundation of Palliative Care

1
Preventive Ethics -The Foundation of
Palliative Care

• Constance Dahlin, ANP, FAAN
• Clinical Director
• Palliative Care Service
• Massachusetts General Hospital
• Boston, MA

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Introduction

• Not much written about preventive ethics in
  health care, let alone palliative care. Usually
  think of it within health promotion rather than
  death promotion.
• Palliative Care experience of a complex patient
  who was with us for 5 years.
• Vision of end of life care as proactive rather
  than reactive
• More recently, I have been struck by my own
  personal experience with my mothers care
• My comments are based on a year of musings about
  preventive ethics and their role in palliative
  care

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What is Preventive Ethics?

• A proactive process to keep ethical conflicts
  from arising
• Allows for rapid response to when it does occur
• Specifically practice and policies in place to
  prevent disagreement and conflict in care,
• activities performed by an individual or group on
  behalf of a health care organization to identify,
  prioritize and address systemic ethics issues
• Professional integrity for the limits of
  treatment

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Examples of the lack of preventive ethics within
end of life

• Ethics for conflicts only,
• In palliative care dont want to wait for
  conflict
• Lack of discussion about end of life preferences
  and values
• Palliative care is often crisis work
• Difficult patients are denied follow-up appts,
  medications even in end of life
• Patients with dual diagnoses
• Lack Process to address portable DNR outside the
  inpatient setting
• Example Policies addressing in-house DNR/DNI
  only, Importance of POLST or MOLST

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Issues Raised by Landmark Cases through the Lens
of Preventive Ethics

• Planning ahead to forgo life sustaining
  treatments (LST)
• Unmarried partners who have spent years together
  but no legal paperwork. Pt has no stated wishes
  on LST
• One partner has end stage liver disease with Hep
  C
• Liver fails returns to ICU- little chance for
  recovery
• Parents become involved but disagree on care
• Patient should have been encouraged to no only
  have HCP and to tell wishes

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Issues Raised by Landmark Cases through the Lens
of Preventive Ethics

• Competency and Refusal to Treatment
• 76 yr old curmudgeon who has declined health care
  for 25 yrs
• Goes down in public space and brought to ED
• Since unconscious is full court press
• Awakens and declines further treatment
• Since he declines, consult for psychiatry for
  capacity, which wouldnt have happened he had
  agreed

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Preventive Ethics

• Look ahead at issues
• Goal of the prevention of conflicts
• How this is enacted
• Early identification of issues
• Predict scenarios
• Knowledge of the natural history of many
  illnesses
• Not accept the status quo of not discussing the
  future or just waiting for something to happen

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Preventive Ethics

• Looks at differences of perspectives
• Requires reflection of institutional factors that
  influence care
• Example what policies in place End of Life
  Care, Life Sustaining Therapies, Futile Care,
  Conflict Resolution, Advocacy versus Ethics
  Conflict or Consultation
• Absence of ethical conflict does not indicate
  good care

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Why is it important?

• Many end of life decisions made in crisis.
• If we could present some scenarios for patients,
  it could remove the crisis mentality.

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Clinical Challenges

• Prolongation of life balancing benefits and
  burdens
• Withholding/withdrawing medical interventions
• DNR
• Medical futility
• Assisted suicide
• Euthanasia

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What constitutes Palliative Care?

• Appropriate care when curative treatment and life
  sustaining treatment are no longer appropriate
  nor desired.
• Aggressive, well-planned symptom control
• Anticipation and planning for future symptoms to
  prevent suffering
• Protection from burdensome interventions
• Minimization of suffering
• Maximization of patients dignity and control
• Psychosocial support for patient and family

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Preventive Ethics and Palliative Care

• Palliative care clinicians help patients make
  fully informed decisions
• Ethical dilemmas on macro and micro levels emerge
  daily in palliative care
• Changes in social/family systems have added to
  complexity of end-of-life/palliative care
• Landmark cases influence legal/ethical history

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How does preventive ethics occur in the
palliative care setting?

• Inherent in routine palliative care discussions
  with patients with life limiting illnesses to
  elicit their values, preferences, concerns that
  form decision making for end of life care
• Document these statements in medical record
• Advocate for patients when they are in the
  hospital even when we dont like their decisions

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GWEN

• 43 yr old female trainer. Married with 2 sons 7
  and 9. Diagnosed with lung cancer and pemphigoid
  characteristics. Receives chemotherapy. Becomes
  weaker with more shortness of breath. Still able
  to parent her boys. Develops acute respiratory
  distress and admitted to ICU with poor prognosis.
  Offered a tracheotomy which she accepted.
  Recovers and becomes active for next 6 months,
  going to sons baseball games. Declines but stays
  at home.

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MAURA

• 62 yr old female with 5 year history of ALS.
  Married 40 years with 3 children and 4
  grandchildren. Developed weakness and diagnosed
  with ALS after 1 year. For 3 years, experienced
  continued weakness. Finally becomes more short of
  breath , begins to use oxygen at night and
  progressed to continuous BiPap. Declines trach or
  g-tube . Develops difficulty swallowing. Chooses
  to have no further treatment. Declines and is at
  home.

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DIFFERENCES IN CARE

• Values
• Preferences
• Beliefs
• Goals of Care
• Resources
• Continuity of Care

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What is a good death?

• A sense of control - site, further treatments,
  who is in attendance
• A sense of dignity and privacy - respect for
  decisions
• A sense of relief from pain and symptoms - state
  of the art pain and symptom control
• Robert Smith BMJ 2000

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What is a good death?

• A sense of information for decisions - informing
  of realistic choices
• A sense of finishing business - life review,
  closure with family and friends
• An ability to die without unnecessary
  prolongation - respect for choices about advanced
  care issues
• Robert Smith BMJ 2000

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Death in the United States

• 90 of deaths from chronic disease
• 70 -75 of patients die in hospital or extended
  care facilities
• 30 -25 of patients die in home
• 1995 results from SUPPORT (Study to Understand
  Patient Preferences in Older Adults Randomized
  Trial) show patient preferences not acknowledged
  and were only instituted days before death

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Challenges for Health Care Systems

• The use of life prolonging therapies even when
  outcome is poor, particularly in academic
  settings.
• -Should everything be offered because it is
  available.
• Dying is expensive as people are dying in
  hospitals and long term care facilities. This
  issue of rationed health care has emerged. What
  is prolonging of life versus prolonging of death.
• Regional and setting variation in acceptance of
  death and dying.

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Challenges for Patients

• Often patient wishes are unknown or not honored.
• May feel pressured to receive therapies they
  dont want.
• Dont know they can decline treatment even if
  they have sought assistance from the ED.
• Dont know about home services or have poor
  coverage for end of life care.

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Challenges for Providers

• Little Education and Training in End of Life Care
  
• May be discouraged to stop futile treatments or
  encouraged to use life sustaining therapies
  whether appropriate or not
• Fear of litigation
• Not enough time to get to know patients and
  families
• Little knowledge on discussions of wishes,
  preferences, and goals of care
• No documentation of important conversations

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Promoting preventive ethics and palliative care
within the institution

• Identify and address personal and professional
  obstacles to appropriate clinical management of
  patients at end-stage disease.
• Encourage a forum for these discussions
• Have a palliative care team to assist
• Provide guidelines to response to urgent
  situations
• Create policies for a public forum to address
  these as suggested by Dr. Quill

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Return to Case Studies

• All the cases have issues that call for proactive
  attention
• Gwen- Foreshadowing of a difficult death.
  Conversation about end of life care difficult.
  Sister a nurse. Husband wrought with sadness.
• Maura- Foreshadowing of further decline.
  Respiratory difficulty

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Discussions with Gwen and Maura

• How to discuss specific or hypothetical?
• When do we discuss
• First visit or along the way Context based on
  relationship

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Communication Essential

• There is time along the disease trajectory to
  help guide the family
• This helps patients and families at critical
  decision making times
• Allows for dying as well as possible

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Types of communication

• Giving Bad News
• Transitioning to Palliative Care
• Goals of Care/Advanced Care Planning
• Prognosis Discussions
• Existential questions - Why
• Discipline specific questions

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Barriers to Communication

• Social personality and communication style
• Cultural
• Professional health care role
• Organizational
• Regulatory

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Why communication at EOL difficult

• Emotional
• Makes patient and family sad, makes them feel
  helpless and out of control
• Makes clinician sad, invokes guilt and sense of
  failure
• Time Sensitive with Rapid Change of Status
• stress of situation
• disease progression
• window of opportunity

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Differences in Communication Style

• Lack of literature for non-physicians
• Sometimes nurses and other providers more
  tentative than physicians
• Concerns about role in such discussions and scope
  of practice issues

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Communication

• Ask how much the patient/family want to know
• If pt doesnt want to know, who do they want to
  know
• Who will make decisions
• Has patient discussed their values, preferences,
  and beliefs
• -Sonia 49 yr old Canadian with brain tumor

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Communication

• Major strategy
• 1. Open end questions are essential
• 2. Lack of agenda can help open discussion
• 3. Keeping discussion open by owning thoughts to
  make it less threatening
• I am curious
• I am worried
• I wonder

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Opening Questions

• How are things going for you/your family?
• How do you think you/your loved one is doing?
• What do you understand about your condition?
• What has the doctor told you/your family?
• What are you hoping from this treatment/admission?
  
• Have you thought about if things dont go the way
  you hoped/planned? Have you talked with anyone
  about this?
• Has someone ever been as sick like this before in
  your family? How did you cope?
• How can we support/help you?
• Help me understand..
• I am worried

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FIFE Model EPERC- Fast Fact 17

• F Feelings related to fears and concerns of
  illness
• (Concerned, fears, feelings)
• I Ideas and explanations of the cause
• (Ideas about what, think might be going on, what
  it means)
• F Functioning on daily life
• (Affecting your life, change in routine)
• E Expectations
• (Expect, hope, expectation)

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Values

• What does the person hold dear in life?
• What is their quality of life
• What gives them strength?

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Preferences for Care

• Does the patient want life sustaining or life
  prolonging treatment
• Return to ED
• If ED for specific reason, transfer to ICU
• Where does patient want care?
• Hospital
• Intensive care
• Home
• Blend

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Beliefs

• Meaning of Life
• Religious
• Spiritual
• The afterlife

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Challenges to Discussions

• Poor communication about possible outcomes
• Poor prognostification
• No clear response to DNR orders
• What does DNR/DNI mean?
• What does comfort care mean?

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If DNR/DNI orders appropriate

• Who decides this?
• Who writes the order?
• What does the order say?
• What does comfort care mean? What does allow
  natural death mean?
• Who should receive resuscitation?
• Who should move from the ED to the ICU?
• What is an arrest?

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Goal of preventive ethics

• Produce measurable and sustainable improvements
• Reduce systems level obstacles to ethics
• Promote behavior in clinicians

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Goal of palliative care

• Promote access to care
• Promote respectful death
• Anticipate issues

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Goal of Preventive Ethics and Palliative Care

• Attaining information about goals and hope for
  care
• Discerning if information shared with surrogate
  decision maker who is hopefully HCP
• Discussing the future and possible critical
  transitions for care

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Preventive Ethics

• Can perhaps expand access to palliative care as
  it has less stigma than palliative care
• Can serve as the basis for palliative care
  consultation since the following forms the
  foundation of the evaluation process
• Values
• Preferences
• Beliefs
• Goals of Care
• Resources
• Continuity of Care

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GWEN

• 43 yr old trainer with lung cancer
• Declined hospice as she felt it implied giving in
  to the disease and she wanted her sons to
  remember she fought hard to stay alive and never
  gave up
• Caregivers respected her wishes and values
• Died at home with home health care

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MAURA

• 62 yr old with ALS.
• Had hospice for 6 months.
• Then decided her quality of life is poor and
  decides to stop her BiPap.
• Hospice nurse and palliative care nurse utilized
  protocol for home withdrawal of life sustaining
  technology with family at her side.

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References Preventive Ethics

• Burns J, Edwards J, Johnson J, Cassem N, Truog
  R. Do-Not-Resuscitate order after 25 years. Crit
  Care Med 2003. 311543-1550.
• Forrow L, Arnold R, Parker L. Preventive Ethics
  Expanding the Horizons of Clinical Ethics 1993.
  44287-293.
• Foglia MB. Building a Preventive Ethics Program.
  National Center for Ethics in Health Care.
  Veterans Hospital Administration. 2009.
• McCullough L. Practicing Preventive Ethics- the
  keys to avoiding ethical conflicts in health
  care. (Special Report Ethical Debates/Ethical
  Breaches) Physician Executive. March 1, 2005.
• McCullough L. Ethical Challenges of End of Life
  Decision Making for Physicians, Patients, and
  their Families. Presentation. Houston Texas.
• Levine-Ariff J. Preventive Ethics The
  Development of Policies to Guide Decision-making.
  AACN Clin Issues Crit Care Nurses 1990. 11
  169-177.
• Sugarman J. Commentary A call for preventive
  ethics. BM. 1990. 338,pb753.

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References

• Texts
• Beauchamp T, Childress J. Principles of
  Biomedical Ethics, 5th edition. Moral Theories,
  2001. Oxford University Press. p 337-381.

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REFERENCES - Communication

• Dahlin, C. Giansiracusa, D. Communication,
  2005.In B. Ferrell, N Coyle (Eds.), Oxford
  Textbook of Palliative Nursing 2nd Edition. New
  York Oxford University Press.
• Dunne K. Effective communication in palliative
  care. Nursing Standard. 200520(13)57-64
• AACN. Peaceful Death Competencies. 2005
• SUPPORT Principal Investigators. A controlled
  trial to improve care for seriously ill patients.
  JAMA 199527415911598.
• City of Hope National Medical Center and the
  American Association of Nursing. End-of-Life
  Nursing Education Consortium (ELNEC) (Supported
  by a grant from the National Cancer Institute.)
  Duarte, CA Authors.
• Heaven C, Maguire P. Communication issues. In
  Lloyd-Williams M, Ed. Psychosocial Issues in
  Palliative Care. Oxford Oxford University Press,
  20031334

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REFERENCES - Communication

• Books
• Stone D, Patton B, Heen S. Difficult
  Conversations How to Discuss What Matters Most.
  1999. New York Penguin Books,
• Fisher R, Shapiro D. Beyond Reason Using
  emotions as you negotiate. 2005. Viking New
  York.
•