palliative care

Introduction

Interdisciplinary care (medicine, nursing, social work, chaplaincy, & other specialties when appropriate) that focuses on improving quality of life for persons of any age who are living with any serious illness & for their families.

Palliative care addresses pain, suffering & quality of life across all stages of treatment.

It does not exclude life-prolonging treatment & rehabilitation.

Community-based palliative care specialist teams in patients' homes is associated with lower likelihood of hospitalization & emergency department visits during the last weeks of life

Dimensions of quality care at the end of life

• self determination
• symptom management
  • pain
  • depression
  • anxiety
  • delirium
• multidimensional quality of life
  • physical
  • emotional
  • social
  • spiritual
• family well-being
• circumstances surrounding death - setting, treatment
• resource use/costs

Goals of medicine

• curing disease/prolonging life
• restoration/preservation of function
• relieving suffering

Indications

• end of life
• palliative intervention in advanced cancer
  • beneficial for lung cancer & colorectal cancer
  • no benefit for pancreatic cancer, gastric cancer, esophageal cancer, hepatobiliary cancer
• patients with organ failure experience similar benefits from palliative care as do cancer patients [36, 45]
  • heart failure, COPD, interstitial lung disease

Management

First step

• establish goals of care
  • patient-centered, open format
• elicit bucket list & use as starting point to initiate goals of care discussion & as strategy for personalized care plan

Compliance with issues of medical ethics

• autonomy
• beneficence
  • acting in the patient's best interest
  • non-malificence, i.e. doing no harm
• justice: treat similar patients similarly
• veracity: always tell the truth, especially in prognosis

Goals of medicine often conflict

• chance to live longer vs a less optimal dying process
• states worse than death where death would be welcome
• the meaning of a natural life span & allocation of resources
  • 30 % of Medicare dollars spent in final year of life

Delivering end of life care requires a combination of 3 things

• a framework for ethical decision making
• technical competence
• systems of care that facilitate coordination of care across goals & venues

Elements of a good death

• pain/symptom management
• avoiding unnecessary prolongation of dying
• preparation for death
• clear decision making
• acheiving a sense of control
• a sense of completion in life
• affirmation of the whole person
• strengthening relationships with loved ones
• contributing to others
• relieving burden on loved ones

End of life decisions

• self determination
• decision-making capacity
• standards for decision-making in patients lacking capacity
  • ethical hierarchy
    • advance directives
    • substituted judgment
    • best interest determined by proxy
  • in most states, physicians turn to family members when no proxy has been appointed
  • physicians should not turn to family members for decision making if patient has capacity, unless asked by the patient to do so
  • concordance of patients preferences & family member's knowledge of those preferences is not high, but is higher than concordance between that of patients & their physicians
  • unrelated friends
    • may be ethically appropriate decision makers
    • state law may require advance directives of court appointment as the patient's guardian
  • court appointment of a guardian should be sought in any incompetent patient without an appropriate surrogate decision maker
• situations where the patient preferences should be made explicit
  • treatment decision making
    • when a reasonable person might prioritize goals other than maximizing survival duration as the primary goal of care
  • advance care planning - when the probability of mental capacity in the near future reaches some threshold value
• advance directives

Ethical considerations in treatment decisions

• no ethical difference between not starting treatment & stopping one that has been started
• all medical interventions are considered ethically (& legally) equivalent, including antibiotics, tube feeding, IV hydration, etc.
• Patient self determination Act of 1991 (PSDA)
• Do not resuscitate (DNR) orders
• Physician-assisted suicide

Special considerations in end of life decisions

• emergency privilege
• unusual treatment choices - in situations where a patient chooses a care plan that defies the physician's recommendations, the patient's wishes should be respected provided:
  • the patient has decision-making capacity & has had the proper informed consent
  • the patient's requested plan fits within the goals of medicine

• physician's prognosis is a central element of both patient & physician decision making, especially at the end of life.
  • Foreseeing: physician's silent cognitive assessment
  • Foretelling: what physician relays to patient & family
  • Physician's prognoses are often wrong & usually optimistic
  • Such errors may occur at both phases (foreseeing & foretelling)
  • Thus, patients are often twice removed from the truth

• Mismatch between preferences & prognosis: (See futility)
  • patient preferences do not match reality 'futility'
  • situations where the 'futility' is considered
  • Futility situations are usually the result of suboptimal practice of clinical ethics

Families in end of life care

• families are important stakeholders in end of life care
  • decision makers
  • caregivers
  • those who must live on after a patient dies
• SUPPORT study revealed financial hardships of family

Care setting at the end of life

• great variability among patients in their desire to die at home vs in the hospital -> many patients don't care
• hospice care

End of life issues in long-term care

• decisions about the aggressiveness of care are best made early in the nursing home stay to insure that care will be consistent with the overall goals
• upon admission to the nursing home
  • designation of surrogate decision makers
  • specification of care goals
  • completion of advance directives, if needed
  • specification of limitations on aggressiveness of care including hospitalization or life-sustaining treatments
    • such decisions are often made without the input of the patient, even when the patient has decisional capacity
    • documentation of patient participation & preferences, if obtainable

Pain management in palliative care

• see chronic pain
  • musculoskeletal pain & inflammation
    • topical analgesics: diclofenac, lidocaine
    • acetaminophen
    • opioids: morphine, hydromorpone, oxycodone, tramadol
    • glucocorticoids: dexamethasone for inflammatory pain
  • neuropathic pain
    • tricyclic antidepressants: nortriptyline
    • SSRI: sertraline, citalopram
    • SNRI: duloxetine
• may overlap with depression & anxiety

Low threshold for treatment of depression & anxiety

• chronic pain may play a role
• choice of antidepressant differs at end-of-life
• SSRI: sertraline, citalopram
• SNRI: duloxetine
• atypical antidepressants: mirtazapine
• stimulants: methylphenidate

Treatment of insomnia

• atypical antidepressant: insomnia
• melatonin receptor antagonists: ramelteon
• hypnotics: zolpidem

Treatment of dyspnea & cough

• high-flow oxygen relieves dyspnea in palliative care patients
• use of a fan to blow air across patient's face as an outpatient
• antitussives: dextromethorphan
• benzodiazepines: lorazepam
• opioids: morphine, codeine
• evidence does not support use of opioids or other pharmaceuticals
  • end-of-life: low-dose opiate can relieve dyspnea

Treatment of nausea & vomiting

• if due to constipation, bowel obstruction, ileus
  • dopaminergic antagonists
    • metoclopramide, prochlorperazine, haloperidol, olanzapine
• if due to chemotherapy, radiation, inflammation, cancer
  • ondansetron, granisetron
• if due to drugs, metabolites, bacterial toxins
  • dopaminergic antagonists, glucocorticoids, serotonin receptor antagonists,
  • neurokinin-1 receptor antagonists: aprepitant, netupitant
• if due to labyrinthine disorder, motion sickness
  • anticholinergic agents: scopolamine, diphenhydraine, promethazine
• if due to increased intracranial pressure: glucocorticoids

Treatment of fatigue

• glucocorticoids: dexamethasone
• stimulants: methylphenidate, modafinil

Appetite stimulation

• atypical antidepressants: mirtazapine
• stimulants: methylphenidate
• glucocorticoids: dexamethasone
• cannabinoids: dronabinol
• progestins: megestrol

Prevention & treatment of delirium

• delirium is common
• individualized management of delirium precipitants & supportive strategies result in shorter duration of distressing delirium symptoms than risperidone or haloperidol
• workup of potentially reversible causes

Pressure ulcer management in palliative care

• reduce odor from deep pressure ulcers
  • frequent cleansing
  • topical metronidazole gel
• treat pain from pressure ulcer
• also see pressure ulcer

Notes

• cancer patients felt better, survived longer, made fewer emergency department visits, & were more likely to die at home when palliative cancer was initiated early after a diagnosis of metastatic non-small-cell lung cancer
• palliative care of benefit for metastatic lung cancer but not for metastatic pancreatic cancer, gastric cancer, esophageal cancer, or hepatobiliary cancer
• early palliative care reduces chemotherapy use near the end of life, but does not decrease survival
• advanced cancer patients reported better quality of life & patient satisfaction with palliative care
• parenteral fluids did little to improve comfort, but frequent nursing visits were beneficial
• palliative care may improve symptoms & quality of life, but not survival
• home-base palliative care associated with lower rates of hospitalization & emergency room visits near the end of life
• patients with noncancer terminal conditions were more likely to receive palliative care at home & for a shorter time than cancer patients

More general terms

• patient care

Additional terms

• core elements of palliative care program
• end of life
• hospice
• management of bowel obstruction without a tube
• management of nausea/vomiting by etiology
• medical ethics
• palliative care consultation
• palliative prognostic measure

Patient information

palliative care patient information