Preventive Ethics

Preventive Ethics -The Foundation of Palliative Care Constance Dahlin, ANP, FAAN Clinical Director Palliative Care Service Massachusetts General Hospital Boston, MA

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 mother’s care • My comments are based on a year of musings about preventive ethics and their role in palliative care

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

Examples of the lack of preventive ethics within end of life • Ethics for conflicts only, • In palliative care don’t 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

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

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 wouldn’t have happened he had agreed

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

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

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.

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

What constitutesPalliative 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 patient’s dignity and control • Psychosocial support for patient and family

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

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 don’t like their decisions

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 son’s baseball games. Declines but stays at home.

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.

DIFFERENCES IN CARE • Values • Preferences • Beliefs • Goals of Care • Resources • Continuity of Care

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

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

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

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.

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

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

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

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

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

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

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

Barriers to Communication • Social – personality and communication style • Cultural • Professional – health care role • Organizational • Regulatory

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

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

Communication • Ask how much the patient/family want to know • If pt doesn’t 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

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

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 don’t 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…

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)

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

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

Beliefs • Meaning of Life • Religious • Spiritual • The afterlife

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?

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?

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

Goal of palliative care • Promote access to care • Promote respectful death • Anticipate issues

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

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

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

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.

References – Preventive Ethics Burns J, Edwards J, Johnson J, Cassem N, & Truog R. Do-Not-Resuscitate order after 25 years. Crit Care Med 2003. 31:1543-1550. Forrow L, Arnold R, Parker L. Preventive Ethics: Expanding the Horizons of Clinical Ethics 1993. 4:4;287-293. Foglia MB. Building a Preventive Ethics Program. National Center for Ethics in Health Care. Veteran’s 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. 1:1; 169-177. Sugarman J. Commentary: A call for preventive ethics. BM. 1990. 338,pb753.

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

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. 2005;20(13):57-64 AACN. Peaceful Death Competencies. 2005 SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill patients. JAMA 1995;274:1591–1598. 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, 2003:13–34

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.

Preventive Ethics - The Foundation of Palliative Care