Transcript Specific Populations - COMFORT Communication Project

Textbook of
Palliative Care Communication
Section IV: Specific Populations
Chapter Twenty-One
COPD AND HEART DISEASE
COPD and Heart Disease
• The two most prevalent chronic, progressive lifelimited diseases affecting Americans today.
• Patients have multiple comorbidities, high
symptom burden, including pain, dyspnea,
emotional distress, fatigue
• Patients and families report the need for
improved communication about disease,
prognosis, progression of disease, and end of life
Illness Trajectory Presents
Communication Challenges
Communication Challenges
• Illness Trajectory Presents Communication
Challenges
– Prognosis predictions are notoriously inaccurate
– Resuscitation preferences are difficult to discuss
because of unpredictable disease trajectory
– Advance care planning is difficult because of
patients’ lack of knowledge regarding illness
trajectory
Communication Strategies
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Ask-Tell-Ask
Replace Medical Jargon
“Hope for the Best, Prepare for the Worst”
Elicit patient’s hopes, goals, and values
REMAP:
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Reframe why current treatment plan is not working
Expect emotion
Map the goals
Align with patient values
Plan medical treatment to match patient goals or values
Chapter Twenty-Two
ONCOLOGY CARE
Palliative Care and Oncology
• Integrative Care Approach
– Focus on quality of life alongside treatment
– Ensure that patient/family understands that
positive tumor response doesn’t always mean
cure
– Determine if patient choice for treatment is to
please the oncologist/primary care provider,
family, or both
– Provide palliative care early in treatment process,
minimize side effects during and after treatment
Palliative Care Communication
Challenges
• Oncology care provider does not recognize
value of palliative care
– Consulting with palliative care seen as failure to
patient
– Pain management viewed as physical care only
• Patient fears abandonment by oncology care
provider
• Patient and family do not understand
palliative care, may have competing goals
Palliative Care Communication Tasks in
Oncology
• Learn from patient how he/she views their illness
• Get to know patient beyond pathology
• Assess decision-making preference; emphasize
partnership
• Acknowledge that patient is more than pathology
– Inquire about patient as a person with a life and
family
• Check if patient has support structure for
medication management
Chapter Twenty-Three
TRANSPLANTATION AND ORGAN
DONATION
The need for palliative care
• Transplant recipients must wait for a considerable
length of time for eligibility and location of a
donor
• During this time, patients require intense
symptom management and family members
often require counseling
• Post-transplant needs include considerable
amounts of care and follow-up
• Palliative care teams are needed to discuss the
possibility that transplantation will not occur in
time and/or will not be effective
Transplantation and Organ Donation
• Solid organ donation
• Non-solid transplantation
• Kidney disease
– Need for symptom control, decision not to begin
dialysis
• Liver transplantation
– Possible struggle with life’s prior lifestyle decisions
• Lung and Cardiac
– Patients can wait 2-3 years
Organ Donation
• Palliative care provider needs to explain:
– the physical setting in the operating room,
medical procedures involved in harvesting organs,
and explanation of what will happen if the patient
becomes an organ donor or a transplant recipient.
– helping the patient decide the most appropriate
time to choose for their death, before organ
donation
Transplantation
• Communicate prognosis and estimate survival
rates via transplantation
– Provide written prognoses
– Ask patients if they want to discuss curability
numbers
– Review patient care at every inflection point, not
just at diagnosis
– Implement standardized symptom and spiritual
assessment
– Conduct informational visits about hospice care
Chapter Twenty-Four
COMMUNICATION CHALLENGES IN
PROVIDING ADVANCE CARE PLANNING
FOR PERSONS LIVING WITH HIV/AIDS
Advance Care Planning (ACP)
• ACP crucial for persons with HIV/AIDS to ensure
ethical treatment of non-legally-related
caregivers such as unmarried partners, to ensure
respect for patient autonomy
• AIDS timing of death is uncertain and decisionmaking capacity may be compromised by HIV –
associated neurological disease
• World Health Organization and UNAIDS
recommend early palliative care throughout
every stage of HIV disease and treatment
ACP for Persons Living with HIV/AIDS
A great deal of stigma is still associated with
HIV/AIDS disease and there is a need to identify
families’ needs and promote communication
between family and patient
ACP communication needs to be:
• Person-centered
• Family-focused
Family-Centered Advanced Care
Planning (FACE-HIV)
• Communication Model and Intervention
– To facilitate conversations about future healthcare
decisions between persons living with HIV/AIDS
and their surrogate decision-maker
– Three 60-90 minutes sessions in a face-to-face
format once a week, with a certified interviewer
• Session One- detail EOL preferences, initiate topic
• Session Two –discuss patient goals of care
• Session Three – advance directive document
Disclosure of Diagnosis of HIV/AIDS
• Patient may not disclose diagnosis to
surrogate, prior to ACP discussions
• ACP discussions with providers are disclosure
opportunities for persons living with HIV/AIDS
• When a surrogate is named, providers should
inquire if disclosure has taken place
– If not, offer to share disclosure as part of ACP
discussion
Chapter Twenty-Five
HOMELESS, MENTALLY-ILL, AND
DRUG-ADDICTED PATIENTS
Homelessness, Mental illness, and
Drug Addition
• Overall health is comprised in these patient
populations
– Interpersonal relationships are difficult
– Culture shifts
– Self-care suffers
– Life expectancy declines
• Membership in one of these categories does
not imply membership in the other two, or
both
Provider Communication Roles
• Based on Peplau (1952)
– Stranger – unknown to client, courtesy treatment
– Resource – answering questions or finding
answers
– Teacher – teaching new things
– Leader – serving as role model
– Surrogate – substituting for another role
– Counselor - assisting with self-discovery, healing
Trust
• A major barrier to communication among
these populations is mistrust.
• Building trust takes time; yet, trust can be lost
in an instant
• Patients must trust that you have their best
interest in mind, that your explanation is
consistent with what they experience
Communication Characteristics
• Homeless
– Unmet needs include shelter, warmth, and safety
– Face discrimination, victimization
• Mentally-ill
– Difficulty dividing reality and perceptions, invoking
fear and anxiety
– Negative stigma that they are dangerous; this is not
true
• Drug-addicted
– Social taboos cause shame, negatively influence their
sense of self-worth
Chapter Twenty-Six
SERIOUSLY-ILL VETERANS
Veteran Population
• 22.6 million American Veterans from:
– World War II
– Korean War
– Vietnam War
– Gulf War
Palliative Care Needs
• Unique experiences and perspectives
– Battlemind
• a soldier’s inner strength to face fear and adversity during
combat, with courage
– Life Threat
• Exposure to combat, death, dying, and wounded
– Loss of Colleagues, Friends, Relationships, Loss of
Limbs
– Warrior Culture and Moral Injury
• Forced to commit actions that may be in direct conflict with
their fundamental values and beliefs
Post-Traumatic Stress Disorder (PTSD)
• PTSD is an anxiety disorder that results from
experiencing, witnessing, or confronting
actual or threatened death or serious injury,
or a threat to physical integrity of self or
others
– Common in War Veterans
• PTSD patients have higher prevalence for depression
and recreational substance abuse.
• May be mistrustful of government-related services
Communication with Veterans
• Directly explore patient’s active duty experience
“What kind of feelings have you had about your
deployment experience?”
“How have you been feeling about yourself since
returning home?”
• Screen for PTSD and moral injury
• Address medication management between VA
and non-VA providers
– Identify list and doses prescribed by both providers
Chapter Twenty-Seven
NEONATAL AND PEDIATRICS
Uniqueness of Pediatric Population
• Palliative care used concurrently with curative
care
• Wide variation in life-limiting diagnoses
• One goal of care is shared decision-making
with parents
• Family often involved
• Death seems tragic, requiring more support
• Parents serve as surrogate decision-makers
Communication Tasks
• Problem-solving and decision-making
– Ally with the parent in expressing desire for child
– Educate parent about research on informing child
about prognosis
– Tell parents the team will help share news with
child
– Develop plan for sharing information with the
child
– Reassure parents that they are good parents and
that they care deeply
Communication Tasks
• Assessing for and implementing interventions
– Anticipatory guidance – describe future conditions
that may develop as part of the child’s illness
• Managing logistical efforts
– Ensure information is clearly and consistently related
to all providers
– Promote knowing the patient and family as people in
a family system
– Provide care that is timely, planned, and
complementary
Talking About Illness With A Child
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Listen first
Talk in terms the child can understand
Be concrete
Pace your explanation
Elicit clarifying information before responding
to the child’s questions
• Reassure the child that they are loved!
Chapter Twenty-Eight
LGBT COMMUNICATION
Overview of Nonheterosexual
Population
• Unique populations within LGBT community
• LGBT population estimates range between 4%
and 10% globally
• By 2050, LGBT people, ages 65 and older, will
number 1 in every 13 elders in the U.S.
Palliative Care Needs
in LGBT Community
• LGBT persons experience higher incidences of lifelimiting and life-threatening diseases.
• Breast, cervical, and ovarian cancer in lesbian women;
higher risk of obesity and associated outcomes: type 2
diabetes, heart disease, stroke, osteoarthritis
• HIV infection rates disproportionately higher, along
with hepatitis B and C, anal cancer in gay men
• Significant health disparities and barriers related
to sexual orientation.
Advance Care Planning and Advance
Directives (ADs)
• Importance of designating healthcare
representative; otherwise, same-sex partner may
have limited or no rights regarding medical
decision-making
• Open communication needed between patients,
families of choice, and healthcare providers
• ADs may protect patient and caregiver partner
from biological family preferences
Communication Challenges
• PC providers must acknowledge patient’s
identity and provide open, nonjudgmental
environment
– Potential staff discrimination; need to address and
ensure sensitive assessment
– Providers must consider what they say, how they
communicate/relate to patients, their own
feelings, biases, assumptions that enter into and
structure the interaction
Communication Strategies
• Incorporate patient’s language choices
• Encourage patient to be open about his or her identity
without fear of discrimination or inferior treatment
• Avoid making assumptions about sexual orientation
and gender identity by using inclusive language
• Create opportunities to:
– talk about families of choice
– to be heard, connected, and engaged in on-going care
• Use visible signs to create a welcoming environment