Palliative care at the end of life, according to main medicine societies of the world

What is palliative care? Original definition and WHO definition

For the Department of Health and Aged Care of the Australian Government, “palliative care is a person and family-centered treatment, care and support for people living with a life-limiting illness. A life-limiting illness is an active, progressive, or advanced disease, that has little or no prospect of cure and that you’re likely to die from at some point in the future. If you have been diagnosed with a life limiting illness, you may continue to live an active life for many years to come.”⁽¹⁾

Palliative care according to WHO

“Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.

• Each year, an estimated 56.8 million people, including 25.7 million in the last year of life, are in need of palliative care.
• Worldwide, only about 14% of people who need palliative care currently receive it.
• Unnecessarily restrictive regulations for morphine and other essential controlled palliative medicines deny access to adequate palliative care.
• Adequate national policies, programs, resources and training on palliative care among health professionals are urgently needed in order to improve access.
• The global need for palliative care will continue to grow as a result of the ageing of populations and the rising burden of noncommunicable diseases and some communicable diseases.
• Early delivery of palliative care reduces unnecessary hospital admissions and the use of health services.
• Palliative care involves a range of services delivered by a range of professionals that all have equally important roles to play – including physicians, nursing, support workers, paramedics, pharmacists, physiotherapists and volunteers – in support of the patient and their family.”⁽²⁾

The European School of Oncology defines palliative care as follows: palliative care is the person-centered attention to symptoms, psychological, social and existential distress in patients with limited prognosis, in order to optimize the quality of life of patients and their families or close friends⁽³⁾.

WHO recommendations

“In spite of recent advances in anti-cancer treatments, most adult cancer patients still ultimately die from their disease. There should therefore be free access to palliative care around the clock and seven days a week, for all cancer patients, as a fundamental hu­man right. At present, the implementation of pallia­tive care and patients’ access to it are inconsistent across Europe and many other parts of the world. The World Health Organization made an important advance in 1986 by first defining palliative care and then updating this definition in 2002. However, this definition could benefit from further refinement in order to reflect the increasing multi-professional specialization in this subject, and to recognize the different models for delivering this type of care. We recommend that palliative care should be defined as follows: palliative care is the person-centered attention to symptoms, psychological, social and existential distress in patients with limited prognosis, in order to optimize the quality of life of patients and their families or close friends. Based on this definition, we propose two further types of palliative care which reflect the reality of how palliative care is actually delivered. Basic palliative care is the standard of palliative care which should be provided by all healthcare professionals, in primary or secondary care, within their normal duties to patients with life-limiting disease. Specialized palliative care is a higher standard of palliative care provided at the expert level, by a trained multi-professional team, who must continually update their skills and knowledge, in order to manage persisting and more complex problems and to provide specialized educational and practical resources to other non-specialized members of the primary or secondary care teams. If a patient has difficult symptoms which cannot be controlled by his/her current healthcare team, he/she has a right to be referred, and the current healthcare provider has an obligation to refer to the local palliative care team. Important priorities to ensure the standardization of, and uniform access to palliative care for all cancer patients include: Integration of palliative care services with the primary care and oncology teams. Establishment of a specialized palliative care service in each major cancer center. Establishment of educational programs covering palliative care for undergraduates, oncologists, primary care team members and specialists training in palliative care. Support for research using appropriate methodologies to underpin the scientific basis of palliative care. Establishment of quality assurance programs. Recognition of palliative medicine as a medical specialty. Establishment of academic centers of excellence with chairs of palliative medicine and palliative care nursing. Removal of unnecessary restrictions on all drugs which are proven to be of benefit in symptom control, especially improving access to strong opioids. Improved information for patients and family carers to allow them to make choices and exercise autonomy.”⁽⁴⁾

“Without urgent action to make palliative care available, vast suffering will continue. All measures should be taken to ensure full access and to overcome current regulatory, educational and attitudinal obstacles to ensure full access to palliative care.” – UN Special Rapporteur on Torture (III)⁽⁵⁾

UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment 14. The right to the highest attainable standard of health, E/C.12/2000/4, August 11, 2000, paragraph 25.

 (II) Human Rights Council, Report of the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, February 1, 2013, A/HRC/22/53, paragraph 55–56; Also see paragraph 51–54, and Recommendations on paragraph 86.

(III) Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/HRC.10/44, January.

Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update

“Key recommendations

Patients with advanced cancer, whether patient or outpatient, should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referring patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer caregivers of patients with early or advanced cancer to palliative care services.

Specific recommendations

Patients with advanced cancer should be referred to interdisciplinary palliative care teams (consultation) that provide inpatient and outpatient care early in the course of disease, alongside active treatment of their cancer (type: evidence-based, benefits outweigh harms; evidence quality: intermediate; strength of recommendation: strong).

Palliative care for patients with advanced cancer should be delivered through interdisciplinary palliative care teams with consultation available in both outpatient and inpatient settings (type: evidence-based, benefits outweigh harms; evidence quality: intermediate; strength of recommendation: moderate).

Patients with advanced cancer should receive palliative care services, which may include referral to a palliative care provider. Essential components of palliative care may include:

• Rapport and relationship building with patients and family caregivers.
• Symptom, distress, and functional status management (e.g., pain, dyspnea, fatigue, sleep disturbance, mood, nausea, or constipation).
• Exploration of understanding and education about illness and prognosis.
• Clarification of treatment goals.
• Assessment and support of coping needs (e.g., provision of dignity therapy).
• Assistance with medical decision making.
• Coordination with other care providers.
• Provision of referrals to other care providers as indicated.

For newly diagnosed patients with advanced cancer, the Expert Panel suggests early palliative care involvement within 8 weeks of diagnosis (type: informal consensus, benefits outweigh harms; evidence quality: intermediate; strength of recommendation: moderate).

Among patients with cancer with high symptom burden and/or unmet physical or psychosocial needs, outpatient cancer care programs should provide and use dedicated resources (palliative care clinicians) to deliver palliative care services to complement existing program tools (type: evidence based, benefits outweigh harms; evidence quality: intermediate; strength of recommendation: moderate).

For patients with early or advanced cancer for whom family caregivers will provide care in the outpatient setting, nurses, social workers, or other providers may initiate caregiver-tailored palliative care support, which could include telephone coaching, education, referrals, and face-to-face meetings. For family caregivers who may live in rural areas and/or are unable to travel to clinic and/or longer distances, telephone support may be offered (type: evidence based; evidence quality: low; strength of recommendation: weak).”⁽⁵⁾

Death in hospitals from European countries

Healthcare provision for people at the end of life has attracted major policy interest in the developed countries over the last three decades.

An analytic dataset included 30 countries accounting for over 95% of Europe’s population. The average national proportion of deaths occurring in hospital in the study period ranged from 26% to 68%, with a median of 52%. Trends vary markedly by region and wealth, with low and decreasing rates in the North-West, and high and increasing prevalence in South and East. Controlling for demographic and economic factors, strong palliative care provision, and generous government finance of long-term care were associated with fewer hospital deaths⁽⁶⁾.

End-of-life care in departments
of emergency medicine

• Patients and their families should be involved, whenever possible, in end-of-life care decisions. All discussions should be documented, with details of those who took part in the discussions.
• Doctors should endeavor to determine whether end-of-life care plans have already been made by asking the patient and their family.
• Discussions regarding patient treatment preferences should be communicated to family doctors, care homes and inpatient teams to enable continuity of care and end-of-life care planning.
• If the end of life is imminent, it may be appropriate to consider interdisciplinary discussions, leading eventually to a “Do not Attempt Resuscitation” (DNAR) order.

Summary of recommendations

It is recommended that all European countries accept the concept of DNAR orders. It is advisable that such orders should be interdisciplinary, and not based solely on the opinion of one doctor.

Establishing a DNAR order does not exclude other care. A checklist or other end-of-life care document aition may be useful, so that all necessary aspects of care are considered.

All DNAR decisions should be discussed with the patient, if he/she is competent and/or with the family, if appropriate.

Organ and tissue donation should be considered as part of end-of-life care in the emergency department.

All emergency departments should have adequate facilities for caring for bereaved relatives⁽⁷⁾.

What is end of life? ESMO recommendation for end of life

The European Society for Medical Oncology (ESMO) defines end of life (EoL) care as care for people with advanced disease once they have reached a point of rapid physical decline, typically the last few weeks or months before an inevitable death as a natural result of a disease⁽⁸⁾.

ESMO guideline of end-of-life care

At the end of life, the goal of care is focused towards comfort, offering a tailored and individualized management of the quality of life (QoL) and approaching the death of the patient.

Thus, the early integration of supportive care and palliative care in oncology is essential. 

Comfort care is holistic and person-centered, focusing on the interrelationship between physical, psychosocial and spiritual issues.

The early integration warrants the cessation of cancer-modifying treatments and disproportionate interventions, focusing on symptom relief and on the “whole person” or “total care”.

It is well documented that palliative care teams improve symptom control, satisfaction and psychological support for patients and families in hospitals, hospices and community settings, particularly at the end of life.

In the absence of multiprofessional palliative care teams, and to enhance better collaboration, oncologists need skills to intervene beyond oncological therapies.

Communication with the patient and their family becomes a priority to ascertain the therapeutic choices available. Furthermore, the care setting at the end of life needs careful evaluation so that monitoring of overall well-being enables the best QoL and a dignified death.

End of life provides specific challenges in the clinical management of oncology patients, which can be addressed through a multiprofessional and collaborative approach.

Oncologists have a responsibility to ensure the smooth transition of the patient and family from living to dying, and to coordinate the necessary resources for effective and timely interventions.

The main issues addressed by the ESMO guideline:

• Communication and the family

- Patients who are parents of young children

• Nursing considerations
• Prognostic factors in advanced cancer

- Diagnosis of dying

• Rationalizing treatments

- Anticancer therapies

• Routes of drug administration
• Nutrition and hydration
• Medication and interventions

- Anticoagulation

- Antibiotics

- Blood transfusion

• Symptoms’ management
• Psychological issues
• Spiritual distress
• Bereavement care.⁽⁹⁾

The European Association for Palliative Care (EAPC) recommendation for sedation in the end of lief is an ethically controversial issue regarding the EoL decisions.

More specifically, we will focus on the themes in the text that are relevant to the so-called continuous deep sedation – i.e., continuing to alter patient’s consciousness without specifically intending to discontinue sedation, when this is done at the end of life.

More specifically still, we think there are two particular questions where the framework would have gained by being more precise: regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep sedation at the end of life and euthanasia.

Intolerable suffering and refractory symptoms

Intolerable suffering from refractory symptoms is generally conceived of as an indication for palliative sedation therapy. According to the EAPC framework, in the absence of refractory symptoms, the use of palliative sedation in the end of life is characterized as “abuse”.

“This [abuse of palliative sedation] may occur by the deliberate use of deep sedation in patients who have no refractory symptoms”⁽¹⁰⁾.

According to the EAPC framework, the presence of refractory symptoms is a necessary condition for an ethically defensible initiation of sedation at the end of life, in particular when there is no intention of discontinuing sedation before the patient dies⁽¹⁰⁾.

EAPC conclusion for intolerable suffering, refractory symptoms, continuous deep palliative sedation and euthanasia

EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms, and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia.

It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are the necessary and sufficient criteria for palliative sedation at the end of life, and why.

The authors conclude with a message about the spirit in which we would like to see frameworks on palliative sedation at the end of life, that the best interest and autonomous decisions of the patients should be the primary concerns⁽¹⁰⁾.

Conclusions

The end of life is an important problem of humanity that must be solved not only by the medical professional but by the whole society.

World Health Organization, The United Nations, ASCO, ESMO, EAPC and CAPC fight for the implementation in all countries of the treatment of pain and other symptoms that define unacceptable suffering.

Palliative care departments and hospices mainly deal with end of life.

ESMO recommends the integration (education facilities etc.) of the therapy of serious symptoms and end of life in oncology centers, in emergency departments and wherever the patient may die.   

Corresponding author: Alexandru C. Grigorescu E-mail: alexgrigorescu2004@yahoo.com

Conflict of interest: none declared.

Financial support: none declared.

This work is permanently accessible online free of charge and published under the CC-BY licence.