Palliative Care amp Hospice It Takes a Village or at Least a Team Jennifer Hill Buehrer LMSW Source Oncology Roundtable interviews and analysis Palliative Care Delivering aggressive symptom management ID: 766475
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Palliative Care & HospiceIt Takes a Village – or at Least a TeamJennifer Hill Buehrer, LMSW
Source: Oncology Roundtable interviews and analysis.Palliative CareDelivering aggressive symptom management Working with patients to set treatment goals Planning for end-of-life care Providing psychosocial & spiritual support to patients and families Four Critical Components
Visual Trajectory Definition
"What do we need to know about you as a person to give you the best care possible?”Shared decision making Advance care planning Symptom management Involvement of loved ones, spiritual or religious grounding (if any), and psychosocial aspects of life Family meetings Honest examination of benefits vs. burdens Hallmarks of Palliative Care
Medical branch of the interdisciplinary approach known as palliative care, and includes hospice for end of life careTo Palliate: to relieve the symptoms or suffering of a disease or disorder Coordination of c are of the whole person - not just individual organs, parts, and conditions Palliative Medicine
Includes research based, best practice standards of care defined by National Quality Forum , Joint Commission and Center to Advance Palliative Care (CAPC) These standards and domains follow the practitioner regardless of setting or diagnosis Palliative Medicine
End of Life Care:Fears vs. DesiresFearsDie on a machine Die in discomfort Be a burden Die in an institution Desires Die without machines Die in comfort Die with family & friends aroundDie at home
Hospice Care End of life care focused on comfort & quality, rather than on curative interventionRequires certification by two physicians that a patient has likely 6 months or less to liveMedicare criteria/guidelines exist for various conditions (lung disease, heart disease, dementia, etc.) to assist physicians in making the assessment Interdisciplinary care involving physician, nurse, home health aide, social worker, & chaplain – at a minimum
Hospice Care All care related to the terminal/qualifying illness is the responsibility of hospiceAll medications, equipment, and professional visits are covered by insuranceCare in a facility (room & board, 24 hour care) is not covered by most insurances – aside from Medicaid and some older policies such as BCBS policies from auto companies
Many patients and families say: “Why didn’t someone tell us about hospice sooner?”Reform, successes, patient centered interdisciplinary approach Hospice still not offered many timesMyths about hospice still exist“But it’s not time for Hospice!”
Physician discomfort communicating difficult news or prognosisNot wanting to “take away hope”Lack of skill negotiating goals of care, treatment priorities, benefits/burdensLack of available time Prognosis not always clear Barriers to hospice care . . .
Personal fears, worries, lack of confidence or competenceAvoidance of patients, familiesProfessionals not wanting to abandon curative optionsMany clinical optionsBenefits and burdens not explained or understood Social workers play an important role in addressing these barriers Barriers to hospice care
Counseling of physicians/mid-level providers who are hesitant to encourage hospiceEducation of interdisciplinary team re: how hospice can address current needsHelping team see transition to hospice from a healing perspective, rather than a “failure”Modeling communicationSocial worker as “barrier buster”
View of Dying in America Entering this life – birth experience Leaving this life – death experience
“We pay a lot of attention now to prenatal care and childbirth. We need to afford this last phase of life the same respect and careful attention we give to birth. We labor into life, and we labor out of life.”Martha Henderson, MSN, Dr.Min, GNP in Transforming the Culture of Dying: The project on Death in America Birth vs. Death in America
Statistics show that 70% of Americans report that they want to die at homeStatistics also show that about the same percentage – close to 75% - die in an institutional setting (hospital, nursing home, etc.)People don’t want to talk about EOL, so they aren’t prepared for itEnd of Life (EOL) Care
75 years ago, people died quickly, with family care at homeAdvances in medical technology and public health now allow people to live longer Most Americans now survive into old age – sometimes surviving their children or others who could otherwise care for them Progression of care
About 50% of all deaths occur in hospitalsAmong those persons over age 65, between 16-37% deaths include hospitalization in an ICU during the last 6 months of life End of Life (EOL) Care
Less than 50 % of severely or terminally ill patients studied had an advance directive in their record End of Life (EOL) Care
At best, survival rates to hospital discharge is 10-15% for patients and less than 5% for elderly or severely ill patients CPR Research……
Social Work - Professional Code of Ethics(NASW)Values, Principles and Standards established to guide social work conduct.Service - To help people in need and to address social problems. Challenge social injustice. Respect the inherent dignity and worth of the person . Recognize the central importance of human relationships . Integrity - Behave in a trustworthy manner. Practice within areas of competence and develop and enhance their professional expertise.
Frequently placed in the position of conveying or interpreting difficult information Communication related to loss or end of life issues can be challenging Sound communication and assessment skills; model effective skills to other disciplines and clients/families in every setting; help clients deal with issues of loss Social worker role in communicating difficult news
Active listening skills and fostering maximum self-determination on the part of the patientThe following questions will help facilitate and streamline the process:Who is the patient? Does she have decision making capacity? Are there advance d irectives? Social worker role in communicating difficult news
Questions:What is his/her special need?What does the patient/ family want help with ? How will the patient/family describe a successful outcome ? Are there relevant psychosocial issues or challenges that affect her ability to participate in decision making? Social worker role in communicating difficult news
Focusing on and assessing the patient and patient’s needsSound active and reflective listening techniquesGuide and direct all members of the decision making team through problem solving and action Social worker role in communicating difficult news
Social Work Summit 2002 (Project on Death in America)Design agenda to improve care for the dying and their families. More than 160,000 social workers represented. NHPCO (National Hospice and Palliative Care Organization)Offers core training for social workers in EOL care Social Work in EOL Care
“Palliative care is a growing area of practice, and many social workers are unprepared to deal with the complex medical, legal, ethical and practical problems faced by dying patients.” Grace Christ, DSW, Columbia University Summit Leader 2002
79 year old man, recent hospitalization (1 of 3 in past 4 months) Lung cancer diagnosis Prognosis of 3-8 months Weak, dependent in some ADLs Adult children want him home with them; younger wife wants him home with hired caregiver You are the social worker in the family meeting Case example
Core Standards:Ethics and ValuesKnowledgeAssessmentIntervention and Treatment Planning Attitude and Self Awareness NASW Standards for SW Practice in Palliative and End of Life Care
Empowerment and AdvocacyDocumentationInterdisciplinary TeamworkCultural CompetencyContinuing Education Supervision, Leadership and Training Core Standards… continued
“Competency” versus “Capacity”The components of decision-making capacityMaking referrals for assessment as needed and consistent with organization’s policy Assessing Decision Making
© GLMF A Legal Term Adults are assumed to be competent unless a holding of incompetence is determined by a court Competence
© GLMF A clinical term recognized by law The ability of a patient to make informed decisions as determined by clinical assessment Capacity
© GLMF Ability to understand information Ability to understand one has a choice to make Ability to weigh benefits and burdens of a choice in accordance with one’s values Ability to communicate a decision Capacity: 4 Components
©GLMF A person who is capable is allowed to make his or her own decisions and participate in advance care planning Advance directive is only relevant when an individual has become in capable There is no legal requirement to make what we consider to be good decisions Assessing Decision Making Capacity
Does the person understand that… AD includes future choices AD is only used when a person has lost capacity AD includes selection of agent and/or specific medical preferences Choices can be changed at any time Assessing Capacity to Complete an Advance Directive (AD)
We choose between competing values dailyInterdisciplinary teams possess a wealth of competency, skills, and wisdomKnow your area of expertise and what you contribute to the discussion. Know your limits and when to refer Every Clinical Situation has an Ethical Dimension
How do you define “quality of life”?Examples:Having mental capacity to understand what is going on, physical capacity to move through and interact with my environment, and be free from painBeing free from pain and symptoms and able to live in my own home Having mental capacity to recognize family and be able to feed myself and have bowel and bladder function Healthcare Professional as Person
Taking care of seriously ill patients is a very difficult job that can wear on youNurses, techs, social workers, and doctors/PAs/NPs are personally affectedAn important part of SW role in Palliative Care is supporting the professional caregiversJust being acknowledged can help a lotHealthcare Professional as Person
Pain management should involve more than just pain medicationRelaxation, breathing exercises, imagery – can be effective interventions for:PainAnxiety and shortness of breathProblem solving or identifying goalsFears and indecisiveness Role of Social Work in Symptom Management
When pharmaceutical intervention is used, it is partly the role of the SW to find resources to support using medication appropriatelySeeking out home care, loved one, or paid caregivers, to assist/superviseIt can also be the SW who helps medical team members look first to non-pharm interventions before moving on to meds Role of Social Work in Symptom Management
Strong tradition and history of advocacy and service to underserved communities:Homeless Undocumented immigrants Communities of color Prisoners Non-Christian Community Organization Role of Social Work in Changing the Culture of Dying in America
AdvocacyFor adequate attention to psychosocial needsFor resources to address care needs, financial concerns, caregiver burdenFor adequate support at homeFor non-pharmacologic intervention when possible for pain, anxiety, grief, etc. For appropriate diagnosis of grief or adjustment reaction vs. depression Role of Social Work in Changing the Culture of Dying in America
ServiceTo the most vulnerable patients, including those with mental health issues, homelessness, dementia patients, etc.To family & “like-family” caregiversTo professional caregiversTo the institution(s) who employ usTo cultural differences and needs Role of Social Work in Changing the Culture of Dying in America
Social workers are an essential member of the interdisciplinary Palliative Care team, and are perhaps most appreciated when they are absent!
Contact info:Jennifer Hill Buehrer LMSW734.712.6055jennifer.buehrer@stjoeshealth.org