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Overview of palliative medicine

Last updated: July 28, 2021

Summarytoggle arrow icon

Palliative medicine is a comprehensive, interdisciplinary approach to medical care that aims to relieve suffering and provide optimal quality of life in patients with serious or life-threatening illnesses. It is often provided in conjunction with life-prolonging therapy. Crucial components of palliative medicine include symptom relief, assistance in the organization of nursing and social services, and psychological support of patients and their families. As a consequence, palliative care teams are typically multidisciplinary: Palliative care specialists identify needs and coordinate care, oncologists (or other specialists) manage the underlying disease, primary care providers address symptom relief, pain specialists treat advanced pain, and mental health providers and chaplains administer psychological and spiritual support. The palliative care team addresses symptoms including pain, breathlessness, nausea, constipation, and delirium, and provides end-of-life comfort care. Palliative care has been shown to decrease symptom intensity, improve quality of life, decrease hospital admissions, and help bereaved family members adapt to their loss. If a patient desires or meets the criteria for palliative care referral, it should be initiated as quickly as possible.

  • Key elements of palliative care
    • Symptom relief, particularly sufficient analgesia
    • Assistance in the organization of adequate, needs-based care
    • Support regarding social services
    • Psychological support of patients and their families
  • Members of a palliative care team
    • Physicians (including palliative care specialists)
    • Nurses
    • Social workers
    • Psychologists
    • Chaplains
    • Pharmacists

Palliative medicine is not synonymous with end-of-life care. It is often used to improve a patient's quality of life even as life-prolonging therapy continues.

References:[1]

General approach [2][3][4]

  • Consider enrolling patients with cancer or other high-morbidity illness in a palliative care program.
  • Frequently reassess the patient's symptoms.
  • If new symptoms arise or current symptoms change, consider investigating the etiology of the change in addition to managing symptoms.
    • Discuss the risk-benefit profile and confirm goals of care with patients and caregivers prior to initiating management of a new or newly exacerbated complication.
    • Adjust approach to eliminate diagnostic and therapeutic procedures that are too invasive, painful, or have other side effects that are not aligned with the patient's preferences or wishes.
  • Involve associated healthcare professionals (e.g., dietitians, physical therapists, and occupational therapists) to help anticipate and prevent complications.

Overview of symptom management [1][5][6]

Address reversible underlying causes of symptoms as long as the investigations and treatment required are consistent with the patient's care plan and wishes.

Overview of symptom management in palliative patients
Symptoms Symptomatic therapy
Pain
  • Optimize nonpharmacological therapy for all patients.
  • Consider early escalation to opioids to provide sufficient pain relief and titrate to effect.
  • Combine fixed-schedule slow-release opioids with short-acting opioids as needed.
  • Consider specific therapy for neuropathic pain and bone pain.

Gastrointestinal

Pulmonary

CNS

Terminal phase
  • Discontinue unnecessary investigations, monitoring, and treatments not required for comfort care.
  • Optimize mouth care and patient positioning.
  • Optimize route of medication delivery for symptomatic treatment.
  • Manage noisy terminal respiratory secretions.
  • Consider palliative sedation in select patients in consultation with a specialist for refractory distress or agitation.

Pain is an unpleasant experience with sensory and emotional components that may occur with our without actual or potential tissue damage. [11]

Approach

Nonpharmacological therapy [3][4]

Nonopioid pharmacotherapy [3][14][16]

Nonopioid palliative pain management [4]
Medication class Medication Important considerations
Acetaminophen
  • In patients at risk of hepatic injury, reduce the maximum daily dose to 3000 mg/day.
  • May only provide limited pain relief; move quickly to opioid analgesic if pain does not improve.
NSAIDs [18]
  • Use with caution in patients with renal insufficiency or CHF.
  • Monitor for signs of renal impairment, gastric ulceration, or bleeding.
Neuropathic pain [19][20] Gabapentinoids
  • Sedation associated with gabapentinoid use is frequently severe.
  • Reduce dose in patients > 65 years, frail patients, and those with renal insufficiency.
Antidepressants
Bone pain [21][22] Bisphosphonates
  • Must be administered in a clinic or hospital
Monoclonal antibodies

Although acetaminophen should be trialed as a first-line analgesic, many patients do not experience significant pain relief with acetaminophen alone. Consider escalation to opioid therapy early. [23]

Opioid therapy [23]

Most patients require a combination of regularly scheduled slow-release opioids and fast-acting doses as needed for breakthrough pain.

  • Treat severe pain first with parenteral therapy.
  • Transition to oral medications once the pain is controlled.
  • Consider administering preemptive doses before painful procedures, e.g., dressing changes, bed baths.
  • Consider continuous opioid infusions to provide sufficient pain relief in terminally ill patients (see “Management of imminently dying patients").
  • Consider extended-release formulations in patients whose pain is not controlled with as-needed dosing or those requiring ≥ 4 as-needed doses per day.

Consider starting opioid treatment with lower doses of potent opioids instead of higher doses of weak opioids. [16][24]

Starting dosages

  • Use short-acting agents (e.g., oral morphine, oxycodone, and hydromorphone) for initial doses.
    • Peak: 1–1.5 hours
    • Duration: 2–4 hours
  • Increase dose only after steady state is reached, i.e., at 4–5 drug half-lives or ∼ 24 hours for short-acting agents.
Opioids in palliative pain management [2][23]
Action Dosing Further information
Initiation of opioid therapy
  • Consider higher starting doses for patients who have recently used narcotics. [25]
  • Consider longer dosing intervals for patients with hepatic and renal impairment (6–8 hours between administrations). [23][26]

Addressing breakthrough pain

  • Administer an additional as-needed dose if patients are still in pain after the drug has reached its peak effect. [27][28]
  • In patients on an established regular dose, prescribe breakthrough pain relief doses of a short-acting opioid equivalent to 10–20% of the total daily dose. [29]
  • Reassess total dose requirements at 24 and 48 hours after initiating treatment and make appropriate changes in daily dosing.
Escalation of opioid therapy
  • Mild to moderate pain: Increase dose by 25–50%.
  • Moderate to severe pain: Increase dose by 50–100%.
  • Avoid dose increases until after 24 hours of therapy with immediate-release opioids (or 72 hours for sustained-release medications). [23]
Parenteral treatment of severe pain
  • When transitioning from PO to IV dosing, divide the usual PO dose by a factor of 2–4, depending on the opioid in question.
Addition of an extended-release opioid
  • Calculate the total dose of as-needed opioids administered in the past 24 hours.
  • Divide by 2 and round down to the nearest whole dose. [23][29]
  • Give this dose twice a day as an extended-release preparation of the same narcotic. [27]
  • Consider transdermal preparations instead of oral ones, depending on patient preference.

The dosing interval for most immediate-release narcotics should be 4 hours, unless the patient has significant renal or hepatic dysfunction.

Refractory pain [23][30]

Cancer pain, in particular, may be refractory to standard medical therapy. The following treatments may be considered under specialist supervision:

Many medications are used off-label or with off-label dosage regimens in palliative care. The recommendations in the following section are consistent with those of palliative care experts.[8][31][32]

Breathlessness (dyspnea) [2][31][33]

  • Background
    • Breathlessness/dyspnea is common in palliative care patients. [3][8]
    • This symptom manifests uniquely in these patients, as it often:
      • Is not easily attributable to an organic disease process
      • Responds poorly to standard medical therapies, e.g., bronchodilators, diuretics
  • Approach: Tailor to the individual's palliative care plan.
    • Identify and treat reversible causes and provide respiratory support in accordance with the patient's wishes.
    • Optimize nonpharmacological therapy.
    • Offer palliative pharmacotherapy as a symptomatic treatment for patients with irreversible breathlessness.
    • Continue previously prescribed treatments if tolerated, e.g., bronchodilators.
    • Discuss more invasive symptomatic therapy, e.g, bronchoscopic stenting, on an individual basis.
  • Treatment of potentially reversible causes
  • Respiratory support as symptom control
  • Nonpharmacological therapy [4]
    • Provide a fan (handheld or for room air circulation).
    • Utilize body posture aids (work of breathing is reduced in the upright position).
    • Maintain a cool ambient temperature.
    • Involve respiratory therapists to educate patients about breathing techniques. [34]
    • Treat anxiety, e.g., with relaxation therapy (see “Palliative anxiolysis”)
  • Palliative pharmacotherapy for breathlessness [8][31][35][36]

Use benzodiazepines with caution, as concurrent administration with opioids increases the risk of respiratory depression. [8]

Consider and address reversible causes of breathlessness in accordance with the patient's wishes and care plan prior to initiating palliative pharmacotherapy.

Nausea and vomiting (N/V)

Constipation [38][41]

Exercise caution in patients with neutropenia, thrombocytopenia, or bowel obstruction who require enemas and suppositories to avoid iatrogenic bacteremia, hemorrhage, or bowel perforation. [41]

Delirium [2][32]

Management of delirium in palliative care [42][43]

See also “Delirium management” for a general approach to therapy in nonpalliative patients.

Anxiety [3]

General principles [2][44]

Patient comfort and psychosocial support for caregivers are the primary concerns.

  • Educate the family members and patient about the dying process.
  • Offer consultation for spiritual support.
  • Discuss end-of-life care, including what resuscitation efforts the patient desires, with the patient and family.
  • Ensure that all care providers are aware of the patient's and family's wishes regarding end-of-life care and are willing to participate.

CPR is only appropriate if the cause of death is reversible. CPR will be ineffective for a patient who is in the imminent phase of death. This should be communicated early to the patient and the family.

Recognizing imminent death [45]

There can be great uncertainty in making a diagnosis of imminent death. Maintain a low threshold to consult a palliative care specialist and focus attention on patient and caregiver needs rather than diagnostic accuracy. [46]

  • Early symptoms include:
    • Increased time spent sleeping
    • Loss of interest in food and drink
    • Delirium
    • Difficulty mobilizing (patients become bedbound)
  • Late symptoms include:
    • Mottled extremities
    • Noisy terminal respiratory secretions [47]
    • Irregular breathing, including periods of apnea
    • Coma
    • Terminal agitation: includes symptoms of cognitive decline, restlessness, altered affect, and/or hallucinations
      • May be part of an unrecognized acute delirium
      • Often distressing to both the patient and the family

Nonpharmacological management

  • Discontinue diagnostic testing and unnecessary monitoring.
  • Provide positioning support to maximize comfort. Use a pressure-relieving mattress, if available.
  • Provide adequate mouth care, e.g.: [48][49]
  • Consider respiratory physiotherapy for terminal respiratory secretions. [10]
  • Consider deactivation of implanted cardiac devices.
  • Stop routine medications (e.g., statins) and treatments (e.g., chemotherapy, dialysis) that do not contribute to symptom relief.

Pharmacotherapy

  • Continue existing symptom control medications.
  • In patients unable to swallow, change medications to nonoral routes.
  • Patients may require continuous infusions as end-of-life symptoms worsen.

Management of terminal respiratory secretions [2]

Consider the following anticholinergic medications to reduce the production of mucus and saliva:

Palliative sedation [50][51]

  • Background
    • Palliative sedation treats patient discomfort by reducing the level of the patient's consciousness.
    • The use of palliative sedation is controversial, as it requires the use of sedating drugs in doses that can cause respiratory depression, potentially hastening death. [52][53][54]
    • Most major palliative care societies support palliative sedation as an exceptional option, to be used only after all other attempts as controlling refractory pain, agitation, and breathlessness have failed.
    • The decision to start palliative sedation should only be made after consultation with the patient or their advocates and the treating team under the guidance of a palliative care physician and/or a medical ethicist.
    • Always follow local institutional policies and national guidance, as the acceptability and legality of palliative sedation vary between countries and cultures. [55]
  • Initiating palliative sedation
    • Indications: refractory symptoms, terminal agitation, or perceived patient discomfort
    • Consider only after identifying and treating any reversible causes of agitation (see “Management of delirium in palliative care”).
    • Consult palliative care to confirm the symptoms are truly refractory and to discuss the appropriateness of palliative sedation.
    • Discuss the plan in detail with the patient and their family.
      • Clarify that treatment will induce patient unconsciousness and has the potential to hasten death.
      • Obtain explicit permission from the family.
  • Medications

Adequate management of end-of-life symptoms may involve large enough doses of medication to cause respiratory depression; while there is a risk this may hasten death, this is considered an acceptable compromise according to the principle of double effect. [56][57]

The health care system measures the outcome (quality of results) of medical treatment and its influence on the current and future health of patients and their quality of life.

  • Features of outcome measurement in palliative medicine
    • General outcome measurements assess, for instance, the physical and psychological aspects of an illness.
    • Specific outcome measurements focus on the evaluation of symptoms, clinical situations, or patient populations.
  • Common outcome measurements in palliative medicine
    • Numeric rating scale (NRS) and visual analog scale (VAS)
      • One-dimensional scales that are based on self-reported data: NRS scale 0–10, VAS scale 0–100
      • E.g., report of pain level, level of respiratory distress, nausea, quality of life, satisfaction, stress
    • Tools to assess functional performance of individuals receiving palliative care: Karnofsky performance status scale, palliative performance status (PPS), Eastern Cooperative Oncology Group (ECOG) performance status

Basics of communication with palliative patients

  • Be honest
  • Use open-ended questions
  • Routinely assess patient understanding
  • Deliver bad news by setting the stage and delivering the news in an empathetic yet comprehensible manner
  • Have a clear follow-up in plan in place to facilitate better communication between provider and patient
  • Understand that patients' desires can differ from those of family members.

NURSE model

The NURSE model is a roadmap for practitioners to address and respond to the emotions of patients empathetically.

Element Description
N Name Name the patient's emotions
U Understand Express understanding for the patient's emotions
R Respect Respect the patient for coping with the situation
S Support Offer support
E Explore Explore the emotions

SPIKES protocol for communicating bad news [58]

The SPIKES protocol is based on empirical data and guidelines and helps practitioners to break bad news to patients.

SPIKES protocol
Element Description
S
  • Setting
  • Setting up the interview and arranging for some privacy
  • Involvement of significant others
  • Avoidance of interruptions
  • Providing information about the time frame of the interview to the patient
P
  • Perception
  • Determination of the patient's perception of the situation
  • Open-ended questions
  • Patients are asked to explain illness/therapy/prognosis in their own words
I
  • Invitation
  • Obtaining a patient's invitation to talk about certain topics
  • Offering opportunities to talk at a later point of time
K
  • Knowledge
  • Warning the patient that bad news/prognosis is coming before giving knowledge and information
  • Avoidance of technical terms
  • Use of short and precise sentences
  • Avoidance of excessive bluntness
E
  • Emotions
  • Identification of emotional triggers and addressing the patient's emotions with empathic responses (nonverbal communication)
S
  • Summary
  • Summary and strategy planning (treatment options, prognosis, next consultation, offering palliative support, inquiring about patient's needs and wishes)

References:[1][58]

Definition

  • Type of palliative care specifically given to patients at the end of life

Principles

  • Preserve the dignity of patients during the final stages of life.
  • Provide maximum comfort to the patient.
  • Ensure pain relief (including administration of opioids, anxiolytics, or sedatives).
  • Prioritize positive effects over potential negative effects (e.g., pain relief over the risk of respiratory depression), according to the ethical principle of double effect.

Who is eligible for hospice care?

  • Estimated life expectancy < 6 months
  • Patients are usually on Medicare, Medicaid, or private insurance plans.
  • The patient (and family) has made the decision to stop curative or life-preserving treatment in order to maximize quality of life.

Not all treatment should be withdrawn. Antibiotics, for example, can still be given if the patient develops an infection.

Facilities

  • Patients can receive hospice care at home, in a skilled nursing facility, or at a hospital.
    • Home hospice services may consist of regular nursing visits, assistance with activities of daily living (e.g., cooking, cleaning, bathing, etc.), or support for home medical equipment (e.g., hospital beds, walkers, bedside commodes, etc.).
    • Hospice care in a hospital or nursing facility may be indicated if the patient's pain or symptoms require more specialized care.
  • Services are available 24 hours a day, 7 days a week.

References:[59]

  • Communication
    • Full information for the parents/legal guardians regarding the diagnosis, treatment options and goals, and prognosis with and without therapy
    • Disclosure to the child: should be adapted according to the age and developmental level
      • Preschoolers (< 6 years): often cannot conceptualize death; provide a clear explanation of their situation with parental presence
      • Elementary schoolers: often begin understanding death and their own situation; allow participation in medical decisions when appropriate
      • Adolescents: often have a full understanding of death; allow participation in decision-making, respect privacy and autonomy
    • Consider the values and preferences of the family.
  • Decision making and ethics
    • Parents/legal guardians are the legal medical decision-makers.
    • Parental consent must be obtained in the pediatric setting (see “Informed consent” in “Principles of medical law and ethics”).
    • Assent from the minor with an appropriate developmental level should also be obtained
    • Consider previously agreed upon DNR orders or advance directives.
    • Encourage exchange with parents in similar situations and facilitate contact with support groups.
    • Ethics committees can aid parental decision making.
  • Psychosocial support
    • Facilitate psychosocial and/or spiritual support for the child patient and his/her family.
    • Address implications of the condition (e.g., disability and death).
    • Consider the personal wishes of the child (e.g., make-a-wish grants, family activities).
    • Facilitate contact to grief and bereavement support for family, e.g., counseling services, support groups.
  • Symptom management
    • Pharmacological management of symptoms (see “Symptoms and symptom control” above)
    • Nonpharmacological measures include massages, physical therapy, acupuncture, behavioral/cognitive techniques (e.g., play therapy, music therapy, art therapy, guided meditations).

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