National Healthcare Decisions Day 2008: The Law, the Talk and the Care

Ira Byock, MD, Dartmouth-Hitchcock Medical Center

Betsy Clark, PhD, ACSW, MPH, National Association of Social Workers (NASW)

Bill Colby, Esq, Center for Practical Bioethics

Moderated by: Nathan Kottkamp, Esq

www.nationalhealthcaredecisionsday.org.

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Bill Colby, J.D.

Senior Fellow, Law and Patient Rights Center for Practical Bioethics

"I'm Dying, STAT, Call My . . . Lawyer?"

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Famous cardiologist Bernard Lown, in the early 1960s, with a DC cardioverter

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The Medtronic pacemaker today

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An early pacemaker (not all that implantable)

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Early rumblings of the living will, summer of 1969

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Nancy Cruzan, two days before her accident – January 1983

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Nancy Cruzan, two years after her accident

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Bill Colby’s power of attorney for healthcare

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Durable Power of Attorney for Healthcare DecisionsI, _________________________, SS#_____________________, appoint the person(s) named below as my agent to make healthcare decisions for me when I cannot communicate what I want done. I want my agent to have the broadest power possible to make all healthcare decisions for me. If federal law provides broader power than state law, then I choose that federal law apply. I want my agent to have the power to make any decision she chooses, just as if I was making the decisions myself. My agent’s power certainly includes the power to accept or reject any medical treatments, including artificial nutrition and hydration. This broad power, in fact, extends to all areas – like reviewing records, or moving me home, to a nursing home, to a hospice house, or wherever she chooses. My agent can enter a DNR or Do-Not-Transfer or any similar kind of order for me, decide about organ donation, autopsy – all decisions. I intend this document as evidence beyond a reasonable doubt of my wishes: I have only one wish – that my agent is allowed to make any and all decisions for me. It does not matter if the medical team agrees with her. It does not matter if that team believes that she is making a decision that, in their view, is not in my best interest or not in accord with what someone believes is my previously-expressed view. I care only about her view. She gets to decide, period. Lastly, I prefer that no one seek to appoint a legal guardian for me for any reason. If such a proceeding somehow happens, I request that my agent be appointed my legal guardian.Agent’s Name______________________________ Phone________________________Address_________________________________________________________________First Alternate Agent Second Alternate Agent

Name_______________________ Name________________________Address_____________________ Address______________________Phone_______________________ Phone_______________________Signature_________________________________ Date__________________________Witness#1________________________ Date_____ (Witness should not be related or Witness#2________________________ Date_____ financially connected to you). Notarization On this ___ day of __________, in the year of ____, personally appeared before me the person signing, known by me to be the person who completed this document and acknowledged it as his/her free act and deed. IN WITNESS WHEREOF, I have set my hand and affixed my official seal in the County of ___________, State of __________. Notary Public______________________________ Commission expires___________

Betsy Clark, Ph.D., ACSW, M.P.H. Betsy Clark, Ph.D., ACSW, M.P.H,

Executive Director of

National Association of Social Workers

Communicating with Individuals and Families About Advance Care Decision Planning

“A person's dying is a unique, fluid process, a time of loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

Best Practice Series / Innovative Practice in Social Work: Care at the End of Life, (SSWLHC, 2001).

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Cultural Diversity

• The diversity of the population in the U.S. is increasing, and with this diversity comes a variety of beliefs and practices related to dying and death.

• Cultural diversity exists among both clients and healthcare providers.

• Cultural groups are not homogeneous; divergent beliefs can exist among people of a similar cultural backgrounds.

• The beliefs of care providers can influence practice and service delivery to individuals and their families affected end of life issues and the need for advance care planning.

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Cultural Awareness and Competency

• Individuals and families are influenced by their ethnicity, culture, values, religion as well as health-related beliefs, and economic situations.

• Each cultural group has its own views about palliative and end of life practices and these views need to be understood, as they affect individuals’ response to illness, loss, pain, dying, and death.

• Social workers and other care providers should understand systems of oppression and how these systems affect client access to, and utilization of, palliative and end of life care.

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Self Awareness and Sensitivity

• Providers’ self-awareness of their own cultural identities is fundamental to practice as information about clients' cultural backgrounds and experiences.

• Providers can move from being aware of their own heritage to becoming aware of, sensitive to, and valuing the heritage of others.

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Cultural Competence

The process by which people and systems respond respectfully and effectively to others of all cultures, languages, classes, races, ethnic backgrounds, religions, and other diversity factors in a manner which recognizes, affirms, and values the worth of individuals, families, and communities and protects and preserves their dignity.

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Culturally Competent Healthcare Providers

• Culturally competent healthcare providers act to prevent and eliminate domination of, exploitation of, and discrimination against any person, group, or class on the basis of race, ethnicity, national origin, color, language, sex, sexual orientation, gender identity, age, marital status, political belief, religion, or mental or physical disability.

Adapted from the NASW Standards of Cultural Competency

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How Does Advance Care Planning (ACP) Help Clients:

• Develops guidelines that determine and document a person’s goals and wishes.

• Ensures that clinical care is provided according to an individual’s choices.

• Decreases crisis decision making by anticipating emergencies.

• Promotes understanding, reflection, and communication about values and preferences.

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End of life decisions and planning:

• Present a broad range of medical as well as psychosocial issues for survivors and care providers.

• Cross ethical, religious, cultural, emotional, legal, and policy boundaries.

• Involve individuals' deepest and most dearly held values, beliefs, and fears, and therefore need to be addressed with sensitivity and compassion.

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Why is Advance Care Planning (ACP) Important?

•ACP can avert some of the crises that often occur when someone becomes incapacitated, and family members are left to face decisions about healthcare.

•ACP can be a gift to loved ones in times of crisis by documenting the wishes of the loved one who can no longer speak for themselves.

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Strategies that Assist Clients and their Loved Ones with ACP

• Offering support and information to family members and friends who may be unprepared to decide what their loved ones might want.

• Explaining that clients may address decision making authority through advance planning.

• Helping clients and family members understand that the decision making authority does not have to rest solely on one person, who may be overwhelmed with the weight of such decisions.

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Hope and ACP

• Hope is often misunderstood by many professionals and a portion of the confusion is that people hope differently.

• While individuals have different ways of hoping, families also have well-established patterns of hoping.

• For many clients and families dealing with ACP, the concept of hope is an important aspect to have and hold on to.

• Hope is a way of thinking, feeling and acting.

• Hope includes the desirability of personal survival and the ability of the individual to exert a degree of influence on the surrounding world and on one’s own world.

• Professionals need to recognize its importance in coping with ACP and decision making.

Providers can Address Ethics, Values and Boundaries

• healthcare providers involved in palliative and end of life care will be confronted with common and complex ethical considerations and legal issues.

• Ethical dilemmas can bring together-- or separate--clients, family members, and care providers due to the beliefs, systems of care, laws, and complexities involved in the situation.

• Individuals often struggle with competing personal beliefs, legal considerations, and choices brought about by advances in medical technology.

• Care providers are challenged to be aware of their own beliefs and reactions in end of life situations, to maintain boundaries and offer the best care to the individual and family.

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Transference and Counter Transference

• A dying person's last days can be improved by the ability to transfer feelings and thoughts with the professional.

• Both roles of transference (the flow of feeling from the client to the provider) and counter transference (the flow of feeling from the provider to the client) should be monitored by self-awareness, supervision, or consultation with colleagues.

• Healthcare professionals and other relevant providers may be bereaved by the dying and death of a client and are vulnerable to professional grief and burnout.

• A good support system is a necessity for professionals in end of life care, including family, friends, co-workers, and clergy who can help provide support.

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What is Professional Grief

• Professional grief usually takes the form of hidden grief -- grief that is internalized and not openly expressed.

• There is no natural outlet for it, and the demands of work overshadow it.

• This lack of expression may result in cumulative grief, or what sometimes is referred to as bereavement overload.

• This can further lead to a legacy of vulnerability, burnout, or post-traumatic stress reaction.

• Hiding grief is not new to professionals.

• There has always been an expectation that professionals who work in high loss settings get used to dying and death.

• In fact, familiarity with death does not make it easier to accept loss or to manage professional grief more effectively.

When Healthcare Providers Assess or Communicate with Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

• Degree of cohesion with individual and loved ones (disengaged vs. engaged, separated vs. connected, enmeshed vs. fragmented).

• Nature of communication with the client and / or family, given the cultural context.

• Confidentiality and inclusiveness of family members, such as disclosing bad news, or care planning, and decision making.

• Communicating client’s / family’s psychosocial needs to the interdisciplinary team.

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Ira R. Byock, MD Director of Palliative Care

Advance Directives & Advance Care Planning

Turning Obligations into Clinical Opportunities

Mr. GB 73 yo

• Recently dx’d glioblastoma

• Underwent craniotomy this admission

• VF cardiac arrest 4 days post-op

• Unresponsive; intermittently agitated

Medical Record: No Advance Directive on file

No pre-op discussion of CPR preferences

Mr. DS 84 yo

• s/p AAA repair ~3 month prior

• ESRD on HD

• s/p recent STEMI

• Acute bacteremia

• Moderate dementia - longstanding

• Intermittent delirium

• Full CPR status

• 3 sons in conflict

The Context of Care

The Context of Care

St. Paul Pioneer Press Dying Well: The miracle of death, Spring 2000

The Context of Care

Physicians and Advance Directives

Advance Directives are not

Prescriptions Plans of care DNR orders CMO orders

What Advance Directives are……and what they are not

Why bother?

Discussing Advance Directives with patients

What Matters Most to People

Being a burden to family

Losing control

Suffering in pain

Deidre Scherer collection

Advance Directives are

A communication tool

An advocacy tool

A counseling tool

What Advance Directives are – and what they are not

Advance Directives are

A communication tool For assisting people in clarifying their values and preferences re: healthcare in serious, potentially life-limiting conditions

An advocacy tool For helping patients project their caring for family into an uncertain future

A counseling tool For supporting and guiding family members in making decisions in stressful situations

Discussing Advance Directives with patients

Why bother?

“An individual receives a diagnosis,

but illness happens to a family.”

Discussing Advance Directives with patients

Why bother?

Before ADs are needed“Advance Care Planning”

Facilitating Advance Care Planning & Advance Directives

“Either this is the wrong chart or – let’s just hope this is the wrong chart.”

Normalize the process

Complete their own advance directives

Facilitating Advance Care Planning & Advance Directives

Normalize the process

“We do this with everyone.”

Facilitating Advance Care Planning & Advance Directives

Complete their own advance directives

“I have an advance directive – and so do the people in

my family.”

Facilitating Advance Care Planning & Advance Directives

Ron GolecRon Golec

If you became seriously ill or injured and could not speak for yourself,

do you know what healthcare treatments you would or would not want?

Facilitating Advance Care Planning & Advance Directives

Ron GolecRon Golec

Do other people know what your wishes are?

Facilitating Advance Care Planning & Advance Directives

Bastienne Schmidt & Philippe Cheng

When They Are Needed Decision making in Serious Illness

Discussing Advance Directives

Advance Directives are not

Prescriptions Plans of care DNR orders CMO orders

What Advance Directives are……and what they are not

The DPOAHC cannot refuse patients medically-administered nutrition and hydration unless:

• Patient had explicitly refused it in the ADor

• “Such treatment would have the unintended consequence of hastening death or causing

irreparable harm…”

New Hampshire Advance Directive Law

Deidre Scherer collection

Working with a DPOAHC

Deidre Scherer collection

Working with a DPOAHC

Systems Issues - Terminology

DNR = Do Not Resuscitate DNAR = Do Not Attempt Resuscitation AND = Allow Natural Death

Systems Issues

Policies and Procedures Pre-hospital DNR forms POLST Information systems Monitoring and Quality improvement

Systems Issues – Policies & Procedures

Advance directives or formal Advance Care Planning notes should be on file:

Prior to procedures that require informed

consent – from cardiac catheterization to

outpatient surgery

Prior to beginning treatment for a serious

condition (ie. cancer chemo- or radiation therapy)

Systems Issues – Pre-Hospital DNR

Systems Issues – Pre-Hospital DNR

Systems Issues - POLST

Systems Issues - POLST

Systems Issues - Information Systems

3 Note Templates

• Advance Care Planning

• Inpatient Code Status

• Pre-Hospital Code Status

Systems Issues - Information Systems

Systems Issues - Information Systems

Systems Issues - Information Systems

Systems Issues - Information Systems

Systems Issues - Monitoring & QI

Panelists:

What do you believe are the two or three best strategies to engage the American public and increase the number of advance directives, particularly the appointment of more POAs?

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• Center for Practical Bioethics, www.PracticalBioethics.org, follow prompts to Caring Conversations

• National Hospice and Palliative Care Organization, www.CaringInfo.org, consumer resources including state-specific advance directives

• Cruzan v. Director, Missouri Dep’t of Health, 497 U.S. 261 (1990)• Charles P. Sabatino, “National Advance Directives: One Attempt to Scale

the Barriers,” NAELA Journal, 1:131-64 (2005). • Patient Self-Determination Act, 42 U.S.C. § 1395cc(f)(1990)• CMS Conditions of Participation, 42 C.F.R. § 489.102• JCAHO Patient’s Rights Standards, RI.2.80 (”The Hospital addresses the

wishes of the patient relating to end-of-life decisions.”)• Physician Quality Reporting Initiative,

www.cms.hhs.gov/PQRI/31_PQRIToolKit.asp• American Bar Assn Commission on Legal Problems of the Elderly, Chart of

state laws, http://www.abanet.org/aging/legislativeupdates/docs/HCPA-CHT_08.pdf

• What Ya’ll Gon’ Do With Me?, end-of-life guide for African-Americans, www.hearttones.com

• Five Wishes document, www.agingwithdignity.org

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Additional Resources (Bill Colby)

Additional Resources

NASW Professional Resources on Advance Directives and Planning

• Understanding End of Life Care: The Social Worker's Role is an NASW web education course accessible at www.naswwebed.org and provides 2.0 free continuing education credits to social workers at no charge. NASW offers other web education courses with advance planning included in the course content, such as Understanding Cancer: The Social Worker's Role, Understanding Cancer Caregiving: The Social Worker's Role, and Understanding Aging: The Social Worker's Role.

• The NASW Standards of Social Work Practice in Palliative and End of Life Care is available to download at www.socialworkers.org/practice at no charge.

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Additional Resources

NASW Consumer Resources

• www.HelpStartsHere.org --NASW's consumer website with information and articles written by social workers to assist consumers in understanding and obtain help on a number of topics including advance care planning.

• This site includes a consumer web course on Understanding End of Life Care, which is available at no charge at http://www.helpstartshere.org/health_and_wellness/death_and_dying/resources/understanding_end_of_life_care_course.html

• This site includes important links to resources such as Aging with Dignity which provides access to a document called, The Five Wishes, which is recognized in many states as an advance directive.

An Everyday Advance Directive ScriptTo Advocate, Educate, and Ask About

Advance Directives

I encourage each of my patients/clients to help me and others protect their wishes for future medical care. It does not take long and it is free. This is something I have done for myself and hope you will, too.

An advance directive is a legal document that tells us who you wish to make medical decisions for you, if you are ever not able to tell us what you want for yourself. It can also tell us what treatments you would want or not want at that time. I like to protect my patients’/clients’ wishes in that way, so I encourage them to complete an advance directive while they are here in the hospital/before a health crisis.

Is that something you would be willing to consider doing?

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National Healthcare Decision Day Script

Today is National Healthcare Decisions Day and all Americans are encouraged to ensure that their future healthcare choices are known and protected. The process does not take long and it is free. This is something I have done for myself and hope you will, too.

An advance directive is a legal document that tells healthcare providers who it is that you wish to make medical decisions for you and what treatments you would want or not want, if you are ever not able to tell us what you want for yourself. Here’s a blank form.

National Healthcare Decisions Day exists to remind all people, regardless of age or current health of the importance of making these decisions known.

Please be sure to complete your advance directive today and also encourage all your loved ones to do the same.

I’m happy to answer any questions you have and for more information, please visit: nationalhealthcaredecisionsday.org

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National Healthcare Decisions Day 2008

www.nationalhealthcaredecisionsday.org