Abstract

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

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

References:^[1]

Overview of last stages of life (according to Jonen-Thielemann)

Phase	Survival prognosis	Characteristics
Rehabilitation	Several months to years	Palliative therapy enables patients to take part in social activities. E.g., indolent non-Hodgkin lymphoma, prostate cancer
Preterminal	Weeks to months	Progression of symptoms: pain management and symptom control Active social life becomes progressively limited. Thoughts about death occur more often.
Terminal	A few days to weeks	Active participation in social life is very limited. Patients are bedridden.
Final	Imminent death (within hours)	Patient is dying.

Symptoms and symptom control

Drug therapy for symptom control depends on:

Individual assessment and periodic reassessment of symptoms
Exclusion of potential drug interactions
Thorough evaluation of side effects

Oral administration is the route of choice in palliative medicine!

Main symptoms in palliative patients	Treatment
Pain	Administration of slow-release opioids according to a fixed time schedule and use of PRN medication (fast-acting opioids, injections) Opioid dosage should be increased in terminally ill patients to provide sufficient pain relief. For details, see pain management. Nociceptive pain Neuropathic pain See also pain concepts in palliative care.
Gastrointestinal symptoms	Nausea and vomiting: metoclopramide , haloperidol, levomepromazine , dimenhydrinate Loss of appetite: dexamethasone or prednisolone Thirst: oral care Constipation: lactulose, macrogol, sodium picosulfate, paraffin Diarrhea: determination of the cause (exclusion of paradoxical diarrhea or administration of laxatives), fluid and electrolyte replacement from an early stage on
Pulmonary symptoms	Dyspnea: fast-acting morphine (e.g., morphine drops); breathing and relaxation techniques Cough: Treatment depends the type of cough (productive/non-productive) and either involves administration of protussives or antitussives. In refractory disease, hydrocodone may be an option. Corticosteroids may be an alternative.
Psychological symptoms	Anxiety and depression: benzodiazepines, antidepressants, antipsychotics, and psychotherapy Delirium: antipsychotics, benzodiazepines Fatigue: Regular exercise, physical therapy, and psychotherapy have been shown to have positive effects. Corticosteroids (e.g., dexamethasone, methylprednisolone) may be used to improve short-term stamina.
Final phase	Restlessness/agitation: midazolam, lorazepam Delirium: haloperidol , metoclopramide Death rattle: butylscopolamine, if necessary
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.

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
- 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
60–90% of oncological patients experience tumor pain, which may be caused by:
- Disorders associated with the tumor
- The therapy
- The tumor

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. Outcome measurements may be subgrouped into general and specific measurements. General outcome measurements assess, for instance, the physical and psychological aspects of an illness, while 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 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
- Karnofsky performance status scale (KPS, Karnofsky performance scale index), 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 compreshensible 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.

The five stages of dying according to Kübler-Ross (1970)

The five stages of dying describe typical emotional and behavioral patterns of terminally ill patients (as well as their family members) during the final stages of their lives. The five stages may occur in sequence, simultaneously, or repeatedly.

Denial
Anger
Bargaining
Depression
Acceptance of approaching death

The NURSE model according to Back (2007)

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

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 according to Baile (2000) for breaking bad news

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

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 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)

Dealing with anger and verbal attacks using the CALM model (according to Schweickhardt and Fritzsche, 2007)

The CALM model helps practitioners to mediate between practitioner and patient when discussing emotionally challenging topics (de-escalation), and to continue the relationship in a constructive manner.

C	Contact	Staying calm and objective; admitting potential mistakes; acknowledgement of the patient's difficult situation
A	Appoint	Sympathy for the patient's emotions and naming them (NURSE model)
L	Look ahead	Naming of the prime and shared objective; clarification of the mutual relationship
M	Make a decision	Offering an “agreement” to the patient to avoid the cause of the anger next time; offering alternatives and time for reflection

References:^[1]^[4]

Hospice

Definition

Type of palliative care specifically given to patients at the end of life
Goal: preserve the dignity of patients during the final stages of life

Who is eligible for hospice care?

Estimated life expectancy < 6 months
The patient (and family) has made the decision to stop curative or life-preserving treatment in order to maximize quality of life.

This does not mean all treatment should be withdrawn! Antibiotics, for example, can still be given if the patient develops an infection!

Where does hospice care take place?

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]