Advance Care PlanningChaplain Steven Spidell, DMin, BCC

Director, Spiritual CareHouston Methodist San Jacinto Hospital

Baytown, Texas

Medical Care and Cultural Expectations

• If there is a medical treatment for a condition, it must always be done

• Saving “life” must always be attempted• Spare no expense• Death is a failure of medical care• Death is unacceptable• Suffering has no meaning; should always be lessened• Suffering has great meaning; should always be

accepted

Crises are unpredictable

• Life is uncertain – accidents and illnesses• Need to have thought about what we would

want to do (or have done for us) should a health emergency happen

• Need to have thought about what we would want to do (or have done for us) when a chronic condition becomes life threatening

Medical Models

I. Dualism: Body, Spirit\Separate, Not Connected

Medical treatment is intended»to prevent physical illness»to restore damaged bodies»To preserve physical life

Medical Models

2. The Unified Theory: Mind=Body=Spirit

Medical treatment is intended• To prevent illness through wholistic measures• To restore damaged persons by treating body,

mind, and spirit• To honor a person’s life with respect for his or

her wishes, values, and decisions

Illness is progressive

• Tendency to view illness as a one-time event that can be taken care of.

• If an Illness involves major body systems (heart, lungs, intestinal tract, liver, kindness, etc.) and becomes chronic…

• …you will need to deal with this as progressively worsening health condition that could well lead to life-or-death situations

What do we wantat the end of life?

• Surveys reveal that most people want–To die at home with family present, if

possible. –Have their pain and symptoms controlled. –Have their wishes known and honored. –To be treated as a whole person, with

appropriate psychosocial and spiritual support.

But what happens…

• Approximately 2/3 of us die in institutions such as hospitals or nursing homes.

• Of those who are hospitalized at the time of their deaths, the majority are isolated in intensive care for long periods of time.

• Many are unconscious for several hours or even days before their deaths. Of those who are conscious, the majority report experiencing pain.

• Families are devastated emotionally and financially.

…And what happens…

• 47% of physicians did not know that their patient did not want CPR.

• Orders written at last minute… While 79% of study participants died with a do-not- resuscitate (DNR) order, 46% of those orders were written within two days of death.

•

…And what happens.

• Time spent in ICU… A total of 38% of study participants who died spent at least 10 days in an intensive care unit (ICU) and 46% were put on a mechanical ventilator within 3 days of death.

• Pain experienced…Half of all study participants who died in the hospital and were conscious until their deaths experienced moderate to severe pain at least half the time in the last 3 days of life (according to interviews with family members).

Healthcare Adapts to Patients’Needs and Expectations

Shared Decision-MakingPatient-Centered CareRelationship-Centered CareAdvance Care Planning

Shared Decision-Making

In order to ensure that each patient gets the treatment that is right for him or her, the choice should be a shared decision, involving both the patient and the clinician.

In the process known as “shared decision-making,” the patient is a fully informed partner in the choice, knowledgeable about the risk and benefit trade-offs of each treatment option. When done right, shared decision-making results in a better decision: a personalized choice based on both the best scientific evidence and the patient’s own values.[Resource: Dartmouth Institute]

Patient-Centered Care

• Respect for patients' values, preferences, and expressed needs

• Coordination and integration of care• Information and communication• Education for patients and providers eir diabetes• Physical comfort• Emotional support -- relieving fear and anxiety• Involvement of family and friends.

[Source: Diabetes Association]

Relationship-Centered Care

Relationship-centered care is healthcare that values and attends to the relationships that form the context of care, including those among and between practitioners and patients; patients as they care for themselves and one another;…..http://www.caringmatters.com/html/DefiningRCC.htm

Narrative Medicine – Co-development of the patient’s story, diagnosis, and treatment

Advance Care Planning

• Advance Care Planning is a…• process of communication between the

patient, the family/health care proxy, and staff• for the purpose of prospectively identifying a

surrogate,• clarifying treatment preferences• and developing individualized goals of care

near the end of life. http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_162.htm

Primary Goals of ACP

• Enhance patient and family education about their illness, including prognosis and likely outcomes of alternative care plans.

• Define the key priorities in end-of-life care and develop a care plan that addresses these issues.

• Shape future clinical care to fit the patient's preferences and values.

Other Potential Benefits of the ACP process

• Help patients find hope and meaning in life, and help them achieve a sense of spiritual peace.

• Strengthen relationships with loved ones.

Timing: At a minimum, ACP should be considered whenever the health care provider would not be surprised if that patient died within the next 12 months.

ACP Objectives

• Maximize the likelihood that medical care serves patient’s goals

• Minimize the likelihood of over- or under-treatment

• Reduce the likelihood of conflicts between family members (and close friends) and healthcare providers

• Minimize burden of decision making on family members or close friends.

Having the conversation

Critical Questionsto Ask your Doctor

• How will I know when my condition is worsening?

• What signs and symptoms should I expect?• Is frequent hospitalization a sign that my

illness has worsened to the point that I should thinking about end-of-life issues?

• When is the right time to get a palliative care team involved in my care?

Critical Discussion Points…

• What is your understanding of your illness?• What does quality of life mean to you?• What are you hopes?• What, if any, are your fears? What are you

most afraid of?• What would be left undone if you were to die

today?

Critical Questions

• Who would make decisions for you? (=Proxy)• NB This persons would have freedom is act on

your behalf in the midst of complex and fluid situations.

• What are your goals for medical treatment?• What would be your goals should you sustain

a permanent brain injury?

…Critical Discussion Points…

• Has faith been important to you at specific times in your life?

• Can you imagine a time when it would not be worth it to stay alive?

• Which symptoms bother you the most?• What practical problems is your illness

create for you?

…Critical Discussion Points.

• Do you have effective methods for treating your symptoms?

• Is there a specific resource to use (person, place, thing) to help you feel better?

• If you have lost family members or other loved ones, what was that like for you?

• Are there family members who need to know what is going on? [Source: Heart Failure Society of America}

ICU Syndrome

• 30% of family members who have had a loved one in ICU experience post traumatic symptoms within 2-3 months

• Those whose loved ones had made clear their wishes at the potential end of life were less stressed.

There are indications of trauma when the person has•Few times of positive experience but a continual reliving of the events surrounding the loss.•Memories of the past linger in the present.•Predominance of unpleasant feelings, anxious, tense, sorrowful, guilty, fearful, isolated, disconnected from people. Unable to move forward.•Rare times of pleasure and enjoyment of life.

ACP Documents

• Advance Care Planning notes• Advance Directive• A do-not-resuscitate order• Physician’s Orders for Life Sustaining

Treatment (POLST)• A living will• A power of attorney• A financial plan

TAKE ACTION!

• Select your surrogate.• “Have the conversation.”• Complete the forms.– Have witnessed or notarized.

• Make several copies.