Summary
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. Crucial components of palliative medicine include symptom relief (e.g., pain management, treatment of nausea), assistance in the organization of nursing and social services, and psychological support of patients and their families. Palliative care has been shown to improve patient symptoms and quality of life, decrease hospital admissions, and reduce bereavement among family members. Accordingly, if a patient desires or meets criteria for palliative care referral, it should be initiated as quickly as possible.
Basics
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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
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Members of a palliative care team
- Physicians (including palliative care specialists)
- Nurses
- Social workers
- Psychologists
- Chaplains
- Pharmacists
References:[1]
Symptoms and symptom control
Pharmacological management of symptoms in palliative medicine
Pharmacological therapy of symptoms in individuals receiving palliative care depends on:
- Individual assessment and periodic reassessment of symptoms
- Exclusion of potential drug interactions
- Thorough evaluation of side effects
| Management of symptoms in palliative patients | |
|---|---|
| Symptoms | Management |
| Pain | |
| Gastrointestinal symptoms |
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| Pulmonary symptoms |
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| Psychological symptoms |
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| Final phase |
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| Note: Some of the listed drugs are not approved for the indication, application, or dosage mentioned above. However, experts recommend the off-label use of these drugs because of the observed benefits for palliative patients. | |
Oral administration is the route of choice in palliative medicine!
Pain concepts in palliative care
In palliative medicine, pain is not only understood according to its quality but also as different pain concepts:
- Total pain: a holistic understanding of pain in palliative medicine, including physical, emotional, social, and spiritual distress (e.g., sorrow, anxiety, despair).
- Mixed pain: Peripheral pain and neuropathic pain occur simultaneously.
- Emotional pain: describes the influence of emotions on pain
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Cancer pain: 60–90% of oncological patients experience pain, which may be caused by the following factors.
- Disorders associated with the tumor (e.g., thrombosis, paraneoplastic syndrome)
- Therapy: postoperative pain, side effects of radiotherapy or chemotherapy (e.g., mucositis, polyneuropathies, stomach ulcer associated with NSAIDs)
- Tumor effects: infiltration of soft tissue and bones; compression of nerves, lymphatic vessels, or blood vessels; cerebral edema
References:[1][2][3]
Outcome measurement in palliative medicine
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.
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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.
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Common outcome measurements in palliative medicine
- Numeric rating scale (NRS) and visual analog scale (VAS)
- 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
Psychosocial models
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 [4]
The SPIKES protocol is based on empirical data and guidelines and helps practitioners to break bad news to patients.
| SPIKES protocol | ||
|---|---|---|
| Element | Description | |
| S |
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| P |
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| I |
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| K |
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| E |
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| S |
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References:[1][4]
Hospice
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:[5]
Pediatric palliative care
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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
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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
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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
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Symptom management
- Pharmacological management of symptoms (see “Symptoms and symptom control” above)
- Non-pharmacological measures include massages, physical therapy, acupuncture, behavioral/cognitive techniques (e.g., play therapy, music therapy, art therapy, guided meditations)
References: [6]