671 Palliative Care

Palliative Care
-Affirms life: Palliative care sustains the quality of life throughout sickness, helping patients cope with the struggles of disease.

-Promotes Quality of life: Palliative care helps patients manage the symptoms of their disease and allows them to continue with their daily lives.

-Treats the person: Palliative care offers a wide range of help to patients, including assistance from pharmacists, nurses, nutritionists, and social workers.

-Supports the family: Palliative care provides a network of people who can help a patient and their family better understand treatment options; thus alleviating much of the stress surrounding illness.

End of life care in the US
-Most deaths in the U.S. happen in health care facilities, with about 20% occurring in nursing facilities

-Approximately 1.6 million people live in 18,000 nursing homes in the U.S. Nearly 500,000 people die yearly in either the nursing home or shortly after being transferred to an acute care facility.

-Costly, burdensome, often high interventions, distress filled last days of life

-Conflict over decisions to use life prolonging treatments

-Less than ¼ of the patients who are eligible for hospice are referred, and 1/3rd were referred in the week before death

End of life care
Seriously ill patients spend most of their final months at home, but most deaths occur in the hospital or nursing home
-Typical deaths are slow, associated with chronic disease in persons with multiple problems
-Typical deaths are marked by dependency and care needs
-Quality of life during the dying process is often poor because of inadequate treatment of distress; fragmented care; strains on family, support system
-Difficult decisions about use of life-prolonging treatments are commonly necessary
What is Palliative Care?
-Medical care that focuses on alleviating the intensity of symptoms of disease.

-Palliative care focuses on reducing the prominence and severity of symptoms.
-Contrary to what is traditionally thought of as “treatment”, palliative care focuses on reducing the prominence and severity of symptoms rather than working to postpone or stop the spread of a disease.

-The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

-Statement from the World Health Organization’s website is at http://www.who.int/en/. The World Health Organization leads the world alliance for health for all. A specialized agency of the United Nations with 191 Member Sates, WHO promotes technical cooperation for health among nations, carries out programes to control and eradicate disease, and strives to improve the quality of human life.

WHO Definition of Palliative Care
Palliative care:
-provides relief from pain and other distressing symptoms;
-affirms life and regards dying as a normal process;
-intends neither to hasten or postpone death;
-integrates the psychological and spiritual aspects of patient care;
-offers a support system to help patients live as actively as possible until death;
-The World Health Organization provides guidance on the purpose of Palliative Care. As a world authority for health, the World Health Organization provides information and guideline pertaining to palliative care. The information provided on this slide can also be found at http://www.who.int/cancer/palliative/definition/en/.
-offers a support system to help the family cope during the patients illness and in their own bereavement;
-uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
-will enhance quality of life, and may also positively influence the course of illness;
-is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
The World Health Organization provides guidance on the purpose of Palliative Care. As a world authority for health, the World Health Organization provides information and guideline pertaining to palliative care. The information provided on this slide can also be found at http://www.who.int/cancer/palliative/definition/en/.
Geriatric Palliative Care
The goal of providing geriatric palliative care to elderly patients with chronic illness is to initiate early discussion of goals of care, prevent patient and family suffering, and guide transition through the trajectory of chronic disease. Patient care is provided in a multidisciplinary team approach, focusing on both the patient and family as units of care. The most important goal is to maximize functional ability to ensure the best quality of life according to the patient’s stated values. Routine assessments by consistent caregivers would ensure early detection and treatment of problems
What is the goal of Palliative Care?
-The goal is to improve the quality of life for individuals who are suffering from severe diseases.

-Palliative care offers a diverse array of assistance and care to the patient.

-For example, someone is diagnosed with breast cancer and is recommended to start chemotherapy and radiation treatments. The patient knows that chemotherapy will take a toll on their body. The patient is referred to a palliative care program for symptom management and receives treatment of their chemotherapy induced nausea and fatigue. Also, the patient is visited by a Medical Social Worker who helps them make good medical decisions. The patient may also receive weekly visits from a chaplain who prays with them and discusses theological questions.

-In this way the quality of life for this individual is greatly improved from the assistance received from a palliative care team.

Domains of Palliative Care
-Structure and Processes of Care
-Physical Aspects of Care
-Psychological and Psychiatric Aspects of Care
-Social Aspects of Care
-Spiritual, Religious and Existential Aspects of Care
-Cultural Aspects of Care
-Care of the Imminently Dying Patient
-Ethical and Legal Aspects of Care
The History of Palliative Care
-Started as a hospice movement in the 19th century, religious orders created hospices that provided care for the sick and dying in London and Ireland.

-In recent years, Palliative care has become a large movement, affecting much of the population.

-Began as a volunteer-led movement in the United states and has developed into a vital part of the health care system.

-The first US hospital-based palliative care programs began in the late 1980s at a few establishments including the Cleveland Clinic and Medical College of Wisconsin. Since then there has been a dramatic increase in hospital-based palliative care programs, now numbering more than 1400.

Palliative vs. Hospice Care
-Division made between these two terms in the United States

-Hospice is a “type” of palliative care for those who are at the end of their lives.

-Palliative care encompasses all of hospice care, but also supports curative or life prolonging therapies; prognosis
> 6mo

Hospice
-The comprehensive care system for patients with limited life expectancy at home or in institutional settings.
-It is also a payment mechanism-
Hospice and Medicare benefit
-For beneficiaries with an expected prognosis of 6 months if the disease follows its usual course certified by a licensed physician
-Must give up curative treatments and agree that the care plan with respect to the terminal illness will be managed by the hospice program
-Includes: physician services, nursing care, medical equipment and supplies, medications, short-term inpatient care for symptom management & family respite, PT or OT, bereavement services, home-health aide services
Obstacles to hospice care
-Limited access

-Lack of family support

-Late referral

-Difficulties in determining prognosis

Palliative vs. Hospice Care
-Palliative care can be provided from the time of diagnosis.
-Palliative care can be given simultaneously with curative treatment.
-Both services have foundations in the same philosophy of reducing the severity of the symptoms of a sickness or older age.
Who receives Palliative Care?
-Individuals struggling with various diseases

-Individuals with chronic diseases such as cancer, cardiac disease, kidney failure, Alzheimer’s, HIV/AIDS and Amyotrophic Lateral Sclerosis (ALS)

Cancer and Palliative Care
-It is generally estimated that roughly 7.2 to 7.5 million people worldwide die from cancer each year.

-More than 70% of all cancer deaths occur in developing countries, where resources available for prevention, diagnosis and treatment of cancer are limited or nonexistent.

-More than 40% of all cancers can be prevented. Others can be detected early, treated and cured. Even with late-stage cancer, the suffering of patients can be relieved with good palliative care.

-Based on WHO projections, cancer deaths will continue to rise with an estimated 9 million people dying from cancer in 2015, and 11.4 million dying in 2030.

Palliative Care and Cancer Care
-Palliative care is given throughout a patient’s experience with cancer.
-Care can begin at diagnosis and continue through treatment, follow-up care, and the end of life.
-The guide Palliative care: cancer control knowledge into action, WHO guide for effective programmes was launched in 2007 on the occasion of World Hospice and Palliative Care Day (October 6).

-Cancer control: knowledge into action, WHO guide for effective programmes is a series of six modules that provides practical advice for programme managers and policy-makers on how to advocate, plan and implement effective cancer
control programmes, particularly in low- and middle-income countries.

-This Palliative care module focuses on cancer and does not specifically address other diseases, however, it recognizes the need for developing palliative care with a public health approach that targets all age groups suffering from diseases or conditions in need of palliative care. These conditions include HIV/AIDS, congestive heart failure, cerebrovascular disease, neurodegenerative disorders, chronic respiratory diseases
and diseases of older people, among others.

Who Provides Palliative Care?
-Usually provided by a team of individuals
-Interdisciplinary group of professionals

Team includes experts in multiple fields:
-Doctors
-Nurses
-social workers
-massage therapists
-Pharmacists
-Nutritionists
-Through the collaboration of these experts, a palliative care team can provide many services to help a patient cope with disease. Doctors, nurses, and pharmacists assist the patient in tailoring the treatment for their specific symptoms. Also, they ensure the patient is not is pain and make recommendations for future treatment.

-“While some patients will want to discuss psychological or spiritual concerns and some will not, it is fundamentally important to assess each individual and their partners and families need for this type of support. Denying an individual and their support system an opportunity to explore psychological or spiritual concerns is just as harmful as forcing them to deal with issues they either don’t have or choose not to deal with.”
– http://en.wikipedia.org/wiki/Palliative_care#Dealing_with_distress

Approaches to Palliative Care
-Not a “one size fits all approach”
-Care is tailored to help the specific needs of the patient
-Since palliative care is utilized to help with various diseases, the care provided must fit the symptoms.
-“Relieving patients from the symptoms of disease, as well as treating any side affects of treatment, involves a broad range of concerns, starting with treating physical symptoms such as pain, nausea and breathlessness. The palliative care teams have become very skillful in prescribing drugs for physical symptoms, and have been instrumental in showing how drugs such as morphine can be used safely while maintaining a patient’s full faculties and function. Usually, a palliative care patient’s concerns are pain, fears about the future, loss of independence, worries about their family, and feeling like a burden.”
Palliative Care Patient Support Services
Three categories of support:

1. -Pain management is vital for comfort and to reduce patients’ distress. Health care professionals and families can collaborate to identify the sources of pain and relieve them with drugs and other forms of therapy.
2.- Symptom management involves treating symptoms other than pain such as nausea, weakness, bowel and bladder problems, mental confusion, fatigue, and difficulty breathing
3. -Emotional and spiritual support is important for both the patient and family in dealing with the emotional demands of critical illness.
-“Religion and spirituality play a role in coping with illness for many cancer patients. This study examined religiousness and spiritual support in advanced cancer patients of diverse racial/ethnic backgrounds and associations with quality of life (QOL), treatment preferences, and advance care planning.”
-from “Religiousness and Spiritual Support Among Advanced Cancer Patients and Associations With End-of-Life Treatment Preferences and Quality of Life”, an article in the Journal of Clinical Oncology. Article from The Harvard Radiation Oncology Program; Center for Psycho-Oncology and Palliative Care Research.

What does Palliative Care Provide to the Patient?
-Helps patients gain the strength and peace of mind to carry on with daily life
-Aid the ability to tolerate medical treatments
-Helps patients to better understand their choices for care
What are the benefits of palliative care?

-High-quality palliative care can make the difference between a comfortable existence and one that involves much suffering. There is no need for patients to suffer from shortness of breath, uncontrolled pain, or nausea. Palliative care also can help a patient’s loved ones begin to deal with the issues of grief and bereavement.
© Copyright 1995-2009 The Cleveland Clinic Foundation. All rights reserved.

– http://my.clevelandclinic.org/disorders/cancer/hic_palliative_care.aspx

What Does Palliative Care Provide for the Patient’s Family?
-Helps families understand the choices available for care
-Improves everyday life of patient; reducing the concern of loved ones
-Allows for valuable
support system
– “We [palliative care team] can…provide a support system to help relatives and friends cope with your illness.”
-http://www.mmc.org/mmc_body.cfm?id=3463
Approaches to Palliative Care
A palliative care team delivers many forms of help to a patient suffering from a severe illness, including :

-Close communication with doctors
-Expert management of pain and other symptoms
-Help navigating the healthcare system
-Guidance with difficult and complex treatment choices
-Emotional and spiritual support for the patient and their family
-There is continuing research to advance the types and approaches to palliative care. Many groups are dedicated to long-term changes for the betterment of health care for dying people and their families.

Palliative Care Is Effective
-Successful palliative care teams require nurturing individuals who are willing to collaborate with one another.

-Researchers have studied the positive effects palliative care has on patients. Recent studies show that patients who receive palliative care report improvement in:
Pain and other distressing symptoms, such as nausea or shortness of breath
Communication with their doctors and family members
Emotional and psychological state

Where to find Palliative Care?
-In most cases, palliative care is provided in the hospital.
-The process begins when doctors refer individuals to the palliative care team.
-In the hospital, palliative care is provided by a team of experts.
-The Palliative Care Provider Directory of Hospitals at www.getpalliativecare.org can locate hospitals which provide palliative care.
Settings for Palliative Care
-Outpatient practice
-Hospital Inpatient
Unit based
Consultation Team
-Home care
-Nursing Home
-Hospice

-The key to gaining the benefits of palliative care is to find help in determining what’s best for the patient and their loved ones.

Cost of Palliative Care
-Most insurance plans cover all or part of the palliative care treatment given in hospitals.

-Medicare and Medicaid also typically coverpalliative care.

Palliative Care is Growing
-Data suggest there is growth in palliative care programs throughout the nation’s hospitals, larger hospitals, academic medical centers, not-for-profit hospitals, and VA hospitals are significantly more likely to develop a program compared to other hospitals.
-Data from The Journal of Palliative Medicine, “The Growth of Palliative Care Programs in United States Hospitals” ; published in Volume: 8 Issue 6: December 13, 2005.
Symptom management
-Symptom management can be inadequate for patients with advanced chronic illness
-As health care delivery systems are redesigned, we need to consider including the provision of advanced illness medical support at home.
– APNs can provide care management and coordination, medical & symptom management, psychosocial support, and education
PALLIATION OF NONPAIN SYMPTOMS
-Constipation
-Nausea and vomiting
-Diarrhea
-Anorexia and cachexia
-Delirium
-Depression
-Dyspnea
-Cough
-Loud respiration
CONSTIPATION
Common for terminally ill patients
Caused by opioids, immobility, poor fluid intake
Treatment
-Use prophylactic laxatives: stool softener & bowel stimulant (docusate sodium & senna or bisacodyl)
-If ineffective, add osmotic laxative (sorbitol, lactulose, polyethylene glycol)
-If no bowel movement in 4 days, consider enema
-If impaction occurs: disimpact manually or with enemas before starting laxative therapy
NAUSEA AND VOMITING
Key Facts
-Occur in 40%-70% of patients with advanced cancer
-May be caused by disease or its treatment

Treatment
Select antiemetic agent on the basis of:
-Likely cause
-Pathway mediating the symptoms
-Neurotransmitters involved

EMESIS CAUSED BY DRUGS & TOXINS
Common Causes
-Drugs: opioids, digoxin
-Biochemical disorders: hypercalcemia, uremia
-Toxins: tumor-produced peptides, infection, radiotherapy, abnormal metabolites

Pathway
-Chemoreceptor trigger zone in vomiting center
-Receptors: dopamine, serotonin, histamine acetylcholine receptor
Treatments
-Dopamine antagonists (eg, haloperidol)
-Prokinetic agents (eg, metoclopramide)
-Serotonergic antagonists (eg, ondansetron, granisetron)

EMESIS ORIGINATING IN THE GUT
Common Causes
-Gastric irritation, gastric distension, liver capsule stretch
-Opioid stasis, constipation, tumors, peritoneal inflammation
-Upper bowel, genitourinary, biliary stasis

Pathway
-Gut
-Receptors: serotonin, histamine receptor type 1

Treatments
-Motility agents for stasis (eg, metoclopramide)
-Serotonin antagonists, antihistamines

EMESIS OF OTHER ORIGINS
Vestibular Apparatus
-Receptors: muscarine, acetylcholine, histamine receptor type 1
-Common causes: drugs (aspirin, opioids), motion sickness (Ménière’s disease, labyrinthitis), local tumors (acoustic neuroma, brain tumors, bone metastases to base of skull)
-Treatment: scopolamine, hydrobromide, meclizine
Cerebral Cortex
-Common cause: raised intracranial pressure
-Treatment: dexamethasone
DIARRHEA
-Affects 7%‒10% of patients with cancer being admitted to hospice
-Consider fecal impaction presenting as watery diarrhea in immobile older patients on opioids
-Review medications for excessive laxative therapy
ANOREXIA AND CACHEXIA
Loss of appetite is almost universal among terminally ill

-Anorexia in actively dying patients who do not wish to eat should not be treated

-Symptoms of dry mouth should be treated

-Appetite stimulants (eg, corticosteroids) may benefit patients in early stages

-Encourage patients to eat whatever is most appealing, without dietary restrictions

DELIRIUM
Common and distressing for both terminally ill patients and their families

-Identify potentially reversible causes (infection, impaction, uncontrolled pain, urinary retention, hypoxia)

-Use low doses of nonsedating antipsychotic

-Actively dying, nonambulatory patients may benefit from sedating antipsychotic

-Avoid benzodiazepines

DEPRESSION
Under-recognized and undertreated in terminally ill

-Vegetative symptoms (insomnia, anorexia, weight change) may not be reliable because of underlying illness

-Be alert for mood change, loss of interest, suicidal ideation

-Treat aggressively: antidepressants, psychiatric consultation, cognitive-behavioral therapy are appropriate
-Standard antidepressant therapy is effective, but most agents have a delayed onset of 2-6 weeks.
-Psychostimulants (methylphenidate, dextroamphetamine) are well tolerated, safe, and effective.
-Electroconvulsive therapy is an effective, safe method of rapidly treating severe depression.

DYSPNEA
Assessment
-Patient self-report is only reliable measure
-Respiratory rate and lab tests often do not correlate

Management
-Treat underlying cause, but do not delay symptom management
-Use O2 if saturation < 90% but use cautiously with patients who retain CO2 -Use fan, open window to stimulate 5th cranial (trigeminal) nerve & reduce dyspnea -Benzodiazepines control anxiety but not dyspnea -Opioids reduce respiratory drive, dyspnea

COUGH
Causes
-Production of excess fluids
-Inhalation of foreign material
-Stimulation of irritant receptors in the airway

Management
-Treat underlying cause
-Add opioids if underlying disease not resolvable
–Dextromethorphan: suppresses cough with few sedative effects
–Codeine, hydrocodone elixirs
–Methadone syrup for longer duration of action
-Nebulized anesthetic for irritated pharynx of local infection or malignancy

Issues with prognosis
-As increased numbers of elders are living longer with more chronic disease, the shift has turned from sudden death from infection or trauma to a gradual decline in health. Many patients follow a trajectory of many months or years of ill health with occasional dramatic exacerbations, which eventually culminate and lead to death. Timing of death is therefore difficult to predict (Lynn, 2000). In addition, physicians often find it difficult and stressful in making such prognosis estimations. It is the patients and their families who ultimately suffer from lack of communication of prognosis.

-Patients who understand their prognosis and the severity of their disease have the opportunity to make informed decisions about their future and health care decisions.

There are some guides available to help health care providers caring for patients with chronic illnesses estimate terminal prognosis, but as mentioned previously, prognosis is difficult to assess in non-cancer diseases. A systematic review by Coventry, Grande, Richards, and Todd (2005) identified several prognostic tools to guide appropriateness for palliative care. One generic measure by Walter et al. (2001) could be useful in determining one-year survival in older patients discharged from a hospital. In addition, a model called The Palliative Prognostic Score helped guide immediate referral to the palliative care service, but needs more validation in the non-cancer disease population (Glare, 2003).

Palliative care and APNs
-MS Programs and certificate programs in Palliative care
-Often linked to Adult NP preparation
Univ of Penn, NYU, Boston College
-Certification available thru
-Hospice and Palliative Nurses Association http://www.hpna.org
-ANCC in development
Our role as NPs
Skills in:
-Effective communication
-Coordination of care
-Education of caregivers
-Assistance with informed decision making
-Competent management of complications
-Symptom management
-Care of the dying
The Chronic Illness Trajectory Framework ( 2002)
Corbin and Strauss (1992) conceptual model built around the idea that chronic conditions have a course that varies and changes over time. The course of illness can be shaped and managed. The illness and the technology used to manage it effect one’s physical well being but may also effect identity fulfillment and the performance of everyday life activities. These biographical needs and ability to perform everyday activities effect the client’s decisions about illness management, which may alter the course of illness. Consideration of the client’s goals of care related to their ( his/her) perceptions of quality of life are philosophies inherent to both geriatric medicine and palliative care.
Phases of Illness Trajectory
Pretrajectory-Prevention, before illness occurs.
Trajectory onset-Diagnostic period, signs and symptoms present.
Crisis-Life-threatening situation.
Acute-Period of active illness requiring hospitalization for management.
Stable-Illness is controlled by medical regimen.
Unstable-Symptoms uncontrolled but no need for hospitalization.
Downward-Progressive deterioration in condition characterized by increasing symptoms or disability.
Dying-Immediate weeks or hours before death.
Content Areas for NPs
Advanced care planning
-Be familiar with your state

Symptom management
-Texts, continuing ed, hospice staff as resources

Reimbursement/coverage
-Know what’s covered, what isn’t

Resources
-Symptom Management Algorithms: A Handbook for Palliative Care)
by Linda Wrede-Seaman 2008

-Palliative and End-of-Life Care: Clinical Practice Guidelines 2006
Keubler, Heidrich, Esper

Advanced Care Planning
Educate your patients that:
-Difficult decisions often occur at the end of life.
-The best time to discuss your end of life wishes with your health care provider and your loved ones is while you’re healthy.
-Advance directives ensure patient self-determination.
-Advance directives aim to improve patient outcomes and the process of health care decisionmaking.
Advanced Directives
-The Patient Self Determination Act (PSDA) of 1991 allows people to prepare their wishes in advance about the degree of supportive care to be provided to them if they become incapacitated.

-A legal document that communicates the preferences for medical treatment when people are unable to speak or make decisions for themselves
Two types:
-Living wills
-Health care proxy appointments; durable power of attorney for health care decision making.

Laws governing advance directives vary from state to state in the U.S.

A patient can revoke an advance directive orally or in writing at any time. For example, a patient may change his mind about his previous decision if his condition changes for the better or worse.

Living Wills
Lists the interventions the patient would request, accept or reject in the future, usually at the end of life.

Goal: to ensure that invasive, aggressive, and life-sustaining treatments will not be used if they would merely prolong the dying process or support a vegetative state.

Health Care Proxy
Durable power of attorney (DPOA) for health care decision making.

Differs from a regular power of attorney, which addresses decision making concerning financial matters or property rights.

A legal document that allows the patient to appoint a person to make health care decisions should the patient become temporarily or permanently incapacitated or be declared legally incompetent.

Documentation
Encourage patients to update the document annually to reflect their current preferences.

Advise patients to notify their healthcare providers and anyone named in their advanced directive of their current wishes and of any future changes

Be Specific!
Instruct patients to include as much information as possible.

Avoid vague terms such as “heroic measures” and “artificial treatment”.

Instead, state whether or not to: hospitalize,administer or withhold tube feedings, IV therapy, dialysis, CPR, and/or ventilation

Obtaining an Advance Directive Form
Forms vary from state to state, so be sure to use a state approved form.

Your state’s form may be obtained from www.partnershipforcaring.org or by calling: (800) 989-9455.

The Eldercare Locator: (800) 677-1116 can direct you to organizations and sites that can provide a copy of the advance directive form used by your state.

Five wishes document
Can’t print..have to send away for and pay for

Use as basis for discussion

Patient centered: My wish for what I want

http://www.agingwithdignity.org/five-wishes.php

Surrogate
A statutorily designated health care decider or an informally identified person, such as a close family member or friend.

If the patient is incapacitated and no advanced directive exists, some other person or persons must provide the direction.

Court-Appointed Guardian
Arranged when an elderly patient is without family or close friends.

Often disinterested and serves a neutral obligatory role.

Do-Not-Resuscitate Orders
DNR stated in the medical record certifies that cardiopulmonary resuscitation (CPR) will not be performed.

Evidence overwhelmingly shows that CPR is not able to restore most patients who are at the end of a life-threatening illness to their previous level of functioning.

Providers should discuss the possibility of cardiopulmonary arrest with patients, describe CPR procedures, and elicit patients’ preferences about interventions.

Ideally, discussion takes place in an outpatient setting or early in hospitalization.

Massachusetts
-Out of hospital do not resuscitate forms
-Known as comfort care forms
-Can be signed by MD, NP, or PA
-Need to be posted in home, pt can wear bracelet
-POLST
END of LIFE CULTURAL ISSUES
Research shows that three basic dimensions in end-of-life care may vary based on culture:
– Communication of “bad news”
-Locus of decision making
– Attitudes toward advance directives and end-of-life care
Communication of “Bad News”
Four primary reasons for non-disclosure are that different cultures:
-May view specific discussion about serious illness or death as disrespectful/impolite.
-Believe that open discussion of serious illness may provoke unnecessary depression/anxiety in patient.
-Believe direct disclosure may eliminate hope.
-Speaking aloud about a condition makes death or terminal illness real due to the power of spoken word.
Locus of Decision Making
The North American norm of individual decision making about medical care may need to include alternate models such as family-based, physician-based, and shared physician-family decision making.

Blacks may view overly individualistic focus as disrespectful to family heritage.

Asians’ family-based medical decisions are a function of filial piety.

Attitudes Toward Advance Directives
Low rates of advance directive completion may reflect a distrust of the health care system, health care disparities, cultural perspectives on death and suffering, and family dynamics such as parent-child relationship.
Cross-Cultural Interview Questions Regarding Serious Illness and End-of-Life Care
-Some people want to know everything about their medical condition, and others do not. What is your preference?

-Do you prefer to make medical decisions about future tests or treatments for yourself, or would you prefer that someone else make them for you?

-To patients who request that the physician discuss their condition with family members: Would you be more comfortable if I spoke with your (brother, son, daughter) along, or would you like to be present? If the patient chooses not to be present: If you change your mind at any point and would like more information, please let me know. I will answer any questions you have. (This exchange should be documented in the medical record.)

-When discussing medical issues with family members, particularly through a translator, it is often helpful to confirm their understanding. I want to be sure that I am explaining your mother’s treatment options accurately. Could you explain to me what you understand about her condition and the treatment that we are recommending?

-Is there anything that would be helpful for me to know about how your family/community/religious faith views serious illness and treatment?

-Sometimes people are uncomfortable discussing these issues with a doctor who is of a different race or cultural background. Are you comfortable with me treating you? Will you please let me know if there is anything about your background that would be helpful for me to know in working with you or your (mother, father, sister, brother)?

POLST – Physician Order for Life-Sustaining Treatment MOLST IN Massachusetts – Medical Orders for Life-Sustaining Treatment
-Advanced care directive does little to prevent unwanted emergency medical care like CPR or transfer to hospital
-Standardized process & form for completing & communicating medical wishes
-Emergency & medical personnel have clear orders in event of emergency
-Valid at home, long-term care facility or hospital
-Based on ethical principal of respect for patient autonomy and legal principle of patient self-determination
POLST Principles
-Suitable for any person of any age with advancing life-threatening medical condition from disease or injury, chronic progressive disease, including but not limited to, dementia & medical frailty
-Any patient who would be considered for a DNR also suitable for POLST or MOLST form
-Patient’s right to accept or refuse medically indicated treatment
-Completely voluntary; no one should ever be forced into completing
Common Scenario
93-year-old failure to thrive female patient with HTN and recent weight loss from long term care facility (LTCF). Discussions have occurred with patient and family that she no longer wants any further treatment and wants to be a DNR (which is in her chart). Staff from LTCF find her unresponsive and cyanotic and call EMS. DNR form cannot be located. EMS arrive and perform CPR, get a weak pulse and blood pressure, intubate her and transport her to local hospital. This is what patient DID NOT WANT.
History of POLST
-Developed in 1991 at Center for Ethics in Health Care at Oregon Health and Sciences University

-Created for patients and families to decide in advance whether or not an intervention in response to a clinical event would carry a “reasonable hope of benefit” or whether that intervention would entail “excessive burden” (Tuohey, 2011)

-Should be used in conjunction with Advanced Care Directives

POLST Success in Other States
Survey of eight geographically diverse long-term adult-care facilities in Oregon showed that resuscitation preferences documented on POLST form were universally followed (Volicer, 2002)

Survey of all Oregon licensed nursing facilities reported POLST form used for at least ½ of residents, and 96% who used POLST reported its use to guide treatment decisions in facility (Hickman, 2004)

Residents with POLST forms more likely to have orders about life-sustaining treatment preferences beyond CPR than residents without (Hickman, 2010)

POLST viewed by hospice personnel as useful, helpful and reliable (Hickman, 2009)

MOLST in Massachusetts
Currently being developed and expanded in MA

Legislature required its use in area of Commonwealth before final implementation in 2014 – Worcester County activated in 2010

Endorsed by Mass DPH, Board of Registration in Medicine, Board of Registration in Nursing, Board of Registration of Physicians Assistants, MA Medical Society

Expansion of Plan 2012-2014 (with healthcare and EMS training) until its statewide implementation in year 2014 for MOLST-trained institutions