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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.

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National healthcare decisions day 2008 the law the talk and the care

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.


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

Bill Colby, J.D.

Senior Fellow, Law and Patient Rights Center for Practical Bioethics


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





Nancy cruzan two days before her accident january 1983
Nancy Cruzan, two days before her accident – January 1983



Bill colby s power of attorney for healthcare
Bill Colby’s power of attorney for healthcare

Durable Power of Attorney for Healthcare Decisions

I, _________________________, 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___________


Communicating with Individuals and Families

About Advance Care Decision Planning

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

Executive Director of

National Association of Social Workers


“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).


Cultural diversity
Cultural Diversity loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


Cultural awareness and competency
Cultural loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”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.


Self awareness and sensitivity
Self Awareness and Sensitivity loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


Cultural competence
Cultural Competence loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

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.


Culturally competent healthcare providers
Culturally Competent Healthcare Providers loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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


How does advance care planning acp help clients
How Does Advance Care Planning (ACP) Help Clients: loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


End of life decisions and planning
End of life decisions and planning: loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


Why is advance care planning acp important
Why is Advance Care Planning (ACP) Important? loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


Strategies that assist clients and their loved ones with acp
Strategies that Assist Clients and their Loved Ones with ACP loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


Hope and acp
Hope and ACP loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

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
Providers can Address Ethics, Values and Boundaries loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


Transference and counter transference
Transference and Counter Transference loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

  • 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.


What is professional grief
What is Professional Grief loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.”

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.


Advance Directives & Advance Care Planning Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

Turning Obligations into Clinical Opportunities

Ira R. Byock, MD

Director of Palliative Care


Mr gb 73 yo
Mr. GB 73 yo Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

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
Mr. DS 84 yo Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

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 Individuals and Families involved in Advance Care Decision Planning, it is important to consider:


The Context of Care Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

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


The Context of Care Individuals and Families involved in Advance Care Decision Planning, it is important to consider:


Physicians and Advance Directives Individuals and Families involved in Advance Care Decision Planning, it is important to consider:


What Advance Directives are… Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

…and what they are not

  • Advance Directives are not

    • Prescriptions

    • Plans of care

    • DNR orders

    • CMO orders


Discussing Advance Directives with patients Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

Why bother?


What Matters Most to People Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

  • Being a burden to family

  • Losing control

  • Suffering in pain

Deidre Scherer collection


What Advance Directives are – Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

and what they are not

  • Advance Directives are

    • A communication tool

    • An advocacy tool

    • A counseling tool


Advance Directives are Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

  • 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 Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

Why bother?


“An individual receives a diagnosis, Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

but illness happens to a family.”


Discussing Advance Directives with patients Individuals and Families involved in Advance Care Decision Planning, it is important to consider:

Why bother?


Before ADs are needed Individuals and Families involved in Advance Care Decision Planning, it is important to consider: “Advance Care Planning”


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

Facilitating Advance Care Planning & Advance Directives


Facilitating Advance Care Planning this is the wrong chart.”& Advance Directives

  • Normalize the process

  • Complete their own advance directives


Facilitating Advance Care Planning this is the wrong chart.”& Advance Directives

  • Normalize the process

  • “We do this with everyone.”


Facilitating Advance Care Planning this is the wrong chart.”& Advance Directives

  • Complete their own advance directives

  • “I have an advance directive – and so do the people in my family.”


Facilitating Advance Care Planning this is the wrong chart.”& Advance Directives

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?

Ron Golec


Facilitating Advance Care Planning this is the wrong chart.”& Advance Directives

Do other people know what your wishes are?

Ron Golec


Discussing Advance Directives this is the wrong chart.”

When They Are Needed Decision making in Serious Illness

Bastienne Schmidt & Philippe Cheng


What Advance Directives are… this is the wrong chart.”

…and what they are not

  • Advance Directives are not

    • Prescriptions

    • Plans of care

    • DNR orders

    • CMO orders


New hampshire advance directive law

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

Patient had explicitly refused it in the AD

or

“Such treatment would have the unintended consequence of hastening death or causing irreparable harm…”

New Hampshire Advance Directive Law


Working with a DPOAHC nutrition and hydration unless:

Deidre Scherer collection


Working with a DPOAHC nutrition and hydration unless:

Deidre Scherer collection


Systems issues terminology
Systems Issues - Terminology nutrition and hydration unless:

  • DNR = Do Not Resuscitate

  • DNAR = Do Not Attempt Resuscitation

  • AND = Allow Natural Death


Systems issues
Systems Issues nutrition and hydration unless:

  • Policies and Procedures

  • Pre-hospital DNR forms

  • POLST

  • Information systems

  • Monitoring and Quality improvement


Systems issues policies procedures
Systems Issues – Policies & Procedures nutrition and hydration unless:

  • 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 nutrition and hydration unless:


Systems issues pre hospital dnr1
Systems Issues – Pre-Hospital DNR nutrition and hydration unless:


Systems issues polst
Systems Issues - POLST nutrition and hydration unless:


Systems issues polst1
Systems Issues - POLST nutrition and hydration unless:


Systems issues information systems
Systems Issues - Information Systems nutrition and hydration unless:


Systems issues information systems1
Systems Issues - Information Systems nutrition and hydration unless:

3 Note Templates

  • Advance Care Planning

  • Inpatient Code Status

  • Pre-Hospital Code Status


Systems issues information systems2
Systems Issues - Information Systems nutrition and hydration unless:


Systems issues information systems3
Systems Issues - Information Systems nutrition and hydration unless:


Systems issues information systems4
Systems Issues - Information Systems nutrition and hydration unless:


Systems issues monitoring qi
Systems Issues - Monitoring & QI nutrition and hydration unless:


Panelists
Panelists: nutrition and hydration unless:

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? 


Additional resources bill colby
Additional Resources (Bill Colby) nutrition and hydration unless:

  • 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


Additional resources
Additional Resources nutrition and hydration unless:

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.


Additional resources1
Additional Resources nutrition and hydration unless:

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 script to advocate educate and ask about advance directives
An Everyday Advance Directive Script nutrition and hydration unless: To 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?


National healthcare decision day script
National Healthcare Decision Day Script nutrition and hydration unless:

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


National healthcare decisions day 2008 www nationalhealthcaredecisionsday org

National Healthcare Decisions Day 2008 nutrition and hydration unless: www.nationalhealthcaredecisionsday.org


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