The goal of this program is to improve end-of-life care. After hearing and assimilating this program, the clinician will be better able to:
End-of-life care: discussion and approach have not been adequately normalized; dying well — can be taught to health care providers and patients; requires change in approach to medicine; while goal of clinicians is helping patients return to baseline, they must accept death as part of life
Discussing end of life: clinicians afraid of discussing end of life and associated fragility with patients, denying patients and families informed decision-making power; emotional aspects of end-of-life care avoided because clinicians find it uncomfortable; all persons should have opportunity to express their wishes for end of life (uncomfortable because contemplating mortality difficult)
Science of compassion or emotions: understanding emotional vocabulary and putting words to feelings; realization by clinician that patient dying associated with feelings of, eg, distress, failure, intimidation, frustration, guilt, defensiveness, anger, worthlessness as clinician, fear, discomfort, insecurity, anxiety, avoidance, stress, inadequacy, lack of preparedness; negative emotions can be motivators of improvement and may encourage clinicians to take time to recognize humanity of patients and of self as care provider; clinicians tend to view death as enemy, while addressing pain and suffering more important (ie, practicing patient-centered care); evidence-based practice primarily concentrates on pathophysiology, but far better outcomes achieved when care humanized; patient-centered philosophy — honor patients by providing optimal care
Palliative care: specialized medical care for individuals with serious life-limiting illness; focuses on relief of symptoms, pain, and stress of illness, regardless of diagnosis; appropriate at any stage of serious illness; can and should be provided along with curative treatment; goals — restore patients to state in which they can benefit from curative treatment; train other clinicians so that specialists in palliative medicine no longer needed
Palliative care vs hospice care: hospice care is subset of palliative care; palliative care focuses on symptom management, regardless of diagnosis (hospice care focuses on symptoms at end of life); palliative care improves quality of life for patient and family (hospice care relieves suffering at end of life); palliative care appropriate at any stage in serious illness and can be provided along with curative treatment (hospice care for patients given prognosis of ≤6 mo to live)
Principles: patient and family are unit of care; family defined as anyone patient deems part of support network; focus on physical, psychological, social, and spiritual well-being; interdisciplinary team approach; focus on quality of life and relief of suffering in all domains; quality of life differs among patients; in some cases, suffering in other domains outweighs suffering of body (clinicians need to learn to address and recognize source of suffering); all 4 domains of suffering comprise total human experience
Areas of suffering: physical — involves, eg, functional ability, strength and fatigue, sleep and rest, nausea, appetite, constipation, pain; psychological — pain increases with anxiety (creates vicious cycle); depression; enjoyment of leisure activities; pain distress; happiness; fear; cognition attention; social — financial problems; caregiver burden; roles and relationships; affection and sexual function; some individuals consider relationship of intimacy one of top 5 values; appearance (eg, after stroke); spiritual — loss of hope in ability to return to baseline and re-engage in activities that bring pleasure; meaning of suffering; religiosity; transcendence
Palliative care as complement: clarifying goals of care and treatment options — one of first actions; when patient seen for first time, cure or return to baseline first goal unless clearly not possible; ensuring that patient truly understands treatment options mainly depends on communication; palliative care includes facilitating communication between families and patients and their providers; mediator sometimes needed (eg, when patient and family first given diagnosis of cancer); after clinician explains patient’s condition or diagnosis, palliative care specialist meets with patient to formulate questions needed for informed decision making; advance care planning helps patients and physicians make informed decisions; referral and coordination of services — predominantly performed for hospice or end-of-life services; social workers have excellent connections to community resources (eg, home health care, rehabilitation facility); spiritual support — spiritual suffering may be particularly predominant at end of life, especially when patient has existential concerns; providers must respect customs related to death and dying in each patient’s culture and religion
Case study: on December 26, 76-yr-old woman found unconscious; has left hemiparesis and minimally responsive; diagnosed with right-sided intraparenchymal hemorrhage (IPH); intubation difficult; transferred from outside hospital; has hypertension (HTN); initial Glasgow Coma Scale score 1 but improved to 3; diabetic; had not taken any medications for HTN for some time for financial reasons; more than likely, preventable stroke; computed tomography (CT) repeated and patient transferred to intensive care unit (ICU); on following day, magnetic resonance imaging (MRI) showed further hemorrhage and patient seen by neurologist; December 29 — failed spontaneous breathing trial; urinalysis from outside hospital positive for Escherichia coli; had airway edema, increased secretions, and hypoxia; December 30 — right pupil noted oval; patient febrile; electroencephalography (EEG) showed diffuse cerebral dysfunction; peripherally inserted central catheter (PICC) line and arterial line placed; December 31 — social worker planning discharge to skilled nursing facility after determination that patient not returning to baseline in near future; fever, labile blood pressure, severe sepsis, and mild acute respiratory distress syndrome (ARDS) noted in electronic medical records (EMR); January 1 — flexible bronchoscopy and bronchioalveolar lavage for ARDS performed; febrile, increase in ventilation settings, and septic encephalopathy noted in EMR; placed on insulin drip
Additional workup: January 2 — chest, abdominal, and pelvic CT obtained to determine source of sepsis; EMR notes that patient at high risk for imminent or life-threatening deterioration due to intracranial hemorrhage, cerebral edema, E coli urinary tract infection, severe sepsis, and acute hypoxic respiratory failure, with failure to wean
Continued deterioration and its management: January 3 — patient not following commands, but responded to noxious stimuli; January 4 — EEG obtained; hypotensive episodes noted with sedation, followed by hypertension with agitation; tongue continued to swell as result of difficult intubation; January 5 — CT and MRI showed increased edema surrounding hemorrhage; EEG suggested epileptic ictal or interictal state; new PICC line placed; January 6 — first comprehensive diagnostic listing made (IPH with ICH score; respiratory failure; hyperglycemia with history of diabetes; left hemiplegia; visual loss; history of hypertension; history of hyperlipidemia; postintubation subglottic vs glottic edema; right-sided pulmonary edema; acute triphasic waves on EEG; metabolic alkalosis; tongue laceration with edema; encephalopathy; hyperammonemia; periodic epileptiform abnormalities)
Change in neurologic status (January 7): EEG and MRI obtained; family meeting held with physician to discuss tracheostomy and percutaneous endoscopic gastrostomy; family elected to continue with all possible interventions to keep patient alive despite knowledge that nursing home and round-the-clock care necessary; tracheostomy at bedside unsuccessful, so procedure scheduled for operating room next day; January 9 — another family meeting held; patient’s husband not in favor of tracheostomy because patient never wished to be bedridden and plegic; palliative care consulted; husband requested that comfort care be started; morphine initiated and patient extubated; palliative care team spoke with sister and other family members; kept in ICU on morphine at 5 mg/hr for comfort; died on same day (passed within 6-7 hr); family pleased with care of patient
Role for palliative care team: could have been helpful at many points in this patient’s care; in addition to improving family’s understanding of each illness and comorbidity, ensuring that they know appropriate questions to ask and had these answered, providing emotional and social support, palliative care provides grief support on day of patient’s death and 2 wk after death (time when grief may escalate)
Impact on medical providers: patient deaths difficult for clinicians as well; speaker recommends recognizing and responding to one’s own grief and being aware of impact of cumulative loss; ask for help when needed; be kind to oneself and practice self-care
Akin Korhan E et al: Practices in human dignity in palliative care: a qualitative study. Holist Nurs Pract, 2018 Mar/Apr;32(2):71-80; Bernard M et al: SMILE consortium team. Relationship between spirituality, meaning in life, psychological distress, wish for hastened death, and their influence on quality of life in palliative care patients. J Pain Symptom Manage, 2017 Oct;54(4):514-522; Fernando A et al: Compassion from a palliative care perspective. NZ Med J, 2018 Jan 19;131(1468):25-32; Goldsborough JL, Matzo M: Palliative care in the acute care setting. Am J Nurs, 2017 Sep;117(9):64-67; Johansen ML, Ervik B: Teamwork in primary palliative care: general practitioners’ and specialised oncology nurses’ complementary competencies. BMC Health Serv Res, 2018 Mar 7;18(1):159; LaValley SA: End-of-life caregiver social support activation: the roles of hospice clinicians and professionals. Qual Health Res, 2018 Jan;28(1):87-97; Mills J et al: Examining self-care, self-compassion and compassion for others: a cross-sectional survey of palliative care nurses and doctors. Int J Palliat Nurs, 2018 Jan 2;24(1):4-11; Mori M et al: Communication about the impending death of patients with cancer to the family: a nationwide survey. BMJ Support Palliat Care, 2018 Jun;8(2):221-228; Nalayeh H: Addressing the cultural, spiritual and religious perspectives of palliative care. Ann Palliat Med, 2018 Jan;7(Suppl 1):AB016; Sanderson CR et al: Patient-centered family meetings in palliative care: a quality improvement project to explore a new model of family meetings with patients and families at the end of life. Ann Palliat Med, 2017 Dec;6(Suppl 2):S195-S205.
For this program, members of the faculty and planning committee reported nothing to disclose.
Ms. Eddy was recorded at the Symposium on Stroke and Cerebrovascular Disease, held October 27, 2017, in San Antonio, TX, and presented by the University of Texas Health, San Antonio, Joe R. and Teresa Lozano Long School of Medicine. For information about upcoming CME activities from this sponsor, please visit www.cme.uthscsa.edu. The Audio Digest Foundation thanks the speakers and the sponsors for their cooperation in the production of this program.
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NE092301
This CME course qualifies for AMA PRA Category 1 Credits™ for 3 years from the date of publication.
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