Textbook of Palliative Care Communication

Section IV: Specific Populations

COPD AND HEART DISEASEChapter Twenty-One

COPD and Heart Disease

• The two most prevalent chronic, progressive life-limited 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

• Ask-Tell-Ask• Replace Medical Jargon• “Hope for the Best, Prepare for the Worst”• Elicit patient’s hopes, goals, and values• REMAP:

– 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

ONCOLOGY CAREChapter Twenty-Two

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

TRANSPLANTATION AND ORGAN DONATION

Chapter Twenty-Three

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

COMMUNICATION CHALLENGES IN PROVIDING ADVANCE CARE PLANNING FOR PERSONS LIVING WITH HIV/AIDS

Chapter Twenty-Four

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 decision-making 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

HOMELESS, MENTALLY-ILL, AND DRUG-ADDICTED PATIENTS

Chapter Twenty-Five

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

SERIOUSLY-ILL VETERANSChapter Twenty-Six

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

NEONATAL AND PEDIATRICS Chapter Twenty-Seven

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

• 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!

LGBT COMMUNICATIONChapter Twenty-Eight

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 Needsin LGBT Community

• LGBT persons experience higher incidences of life-limiting 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