Terminal Illness – WMA – The World Medical Association

Adopted by the 35^th World Medical Assembly, Venice, Italy, October 1983
Revised by the 57^th WMA General Assembly, Pilanesberg, South Africa, October 2006
and by the 73^rd WMA General Assembly, Berlin, Germany, October 2022

PREAMBLE

When a patient is seriously ill and the restoration of health may not be possible, the physician and the patient are often faced with a complex set of decisions regarding medical treatment.

The end of life must be recognized and respected as an important part of a person’s life.

Advances in medical science have improved the ability of physicians to address many issues associated with end-of-life care. While the priority of research to cure disease should not be compromised, more attention must be paid to developing palliative treatments and improving assessment and response to the physical, psychological, social and spiritual or existential components of terminal illnesses and other conditions at the end of life.

WMA remains firmly opposed to euthanasia and physician-assisted suicide, as set forth in the WMA Declaration on Euthanasia and Physician-Assisted Suicide.

Ethically-appropriate care at the end of life should routinely promote patient autonomy and shared decision-making, and be respectful of the values of the patient, his or her family or intimate associates, and surrogate(s). The WMA recognizes that attitudes and beliefs toward death and dying vary widely from culture to culture and among different religions, and palliative care resources are unevenly distributed. The approach to medical care at the end of life will be influenced significantly by these factors, and thus attempting to develop detailed universal guidelines on terminal care is neither practical nor wise. Therefore, the WMA articulates the following:

RECOMMENDATIONS

Pain and Symptom Management

Palliative care at the end of life is part of good medical care. The objective of palliative care is to maintain patient dignity and freedom from distressing symptoms. Care plans should emphasize keeping a patient as comfortable as possible and the patient’s pain controlled while recognizing the importance of attention to the social, psychological and spiritual needs of the patient, and his or her family and intimate associates.
The clinical management of pain in patients at the end of life is of paramount importance in terms of alleviating suffering. The WMA Resolution on Access to Adequate Pain Treatment (2020) makes recommendations for physicians and governments that optimize treatment of pain and other distressing symptoms. Physicians and National Medical Associations should promote the dissemination and sharing of information regarding pain management to ensure that all physicians involved in end-of-life care have access to best practice guidelines and the most current treatments and methods available. National Medical Associations should oppose laws or regulations that unduly inhibit physicians from providing intensive, clinically appropriate symptoms management for patients at the end of life in keeping with recognized best practices.
When a patient at the end of life experiences severe pain or other distressing clinical symptoms that do not respond to intensive, symptom-specific palliation, it can be appropriate to offer sedation to unconsciousness as an intervention of last resort. Sedation to unconsciousness must never be used to intentionally cause a patient’s death and should be restricted to patients in the final stages of life. Thorough efforts should be made to obtain consent of the patient or the patient’s surrogate(s).
Palliative care is often provided by multidisciplinary healthcare teams. When possible, the physician should be the leader of the team, being responsible, amongst other obligations, for diagnosis and medical treatment plans. A carefully kept medical record is of the utmost importance. The rationale for all symptom management interventions, including medications for symptom relief, should be documented in the medical record, including the degree and length of sedation and specific expectations for continuing, withdrawing, or withholding future life-sustaining treatments.
The health care team should promote collaborative care of the patient and offer bereavement support after the patient’s death. The needs of children and families or intimate associates may require special attention and competence, both when children are patients and when they are dependents of patients.

Education and Research

Education of healthcare professionals should include the teaching of end-of-life medical care. Where it does not exist, the establishment of palliative medicine as a medical specialty should be considered. In countries where palliative medicine is not a recognized specialty, post-graduate training in palliative medicine can nevertheless improve the quality of palliative care provided.
Physician education should help to develop the skills necessary to increase the prevalence and quality of meaningful patient advance care planning for patients with life-threatening illness and the right of patients to use written advance directives that describe their wishes and goals regarding care in the event that they are unable to communicate. Physicians should receive education to encourage their patients to formally document their goals, values and treatment preferences and to appoint a substitute health care decision maker with whom the patient can discuss in advance his or her values regarding health care and treatment.
Governments and research institutions are encouraged to invest additional resources in developing treatments to improve end-of-life care. This includes, but is not limited to, supporting research on general medical care, specific treatments, psychological implications and organization to improve end-of-life care.
When employing treatments, the physician must carefully consider the balance between the intended benefits to the patient and the potential harm. National Medical Associations should support the formulation of palliative treatment guidelines.
The physician must also communicate to the patient a willingness to discuss at any time the natural course of the disease and what to expect during the dying process, while also providing guidance about treatments and alternatives that could ease the patient’s suffering, including palliative care or psychotherapy. If a patient indicates a desire to die or expresses suicidal thoughts, the physician has a duty to engage in open and confidential discussions with the patient to understand the motives and reasoning behind these thoughts.
Physicians should assist the dying patient in maintaining an optimal quality of life by controlling symptoms and addressing psychosocial and spiritual needs, to enable the patient to die with dignity and in comfort. Physicians should inform patients of the availability, benefits and other aspects of palliative care. Discussions about patient preferences should be initiated early, routinely offered to all patients and should be revisited regularly to explore any changes patients may have in their wishes, especially as their clinical condition changes. Information and communication among the patient, his or her family or intimate associates, surrogates and members of the health care team are one of the fundamental pillars of quality care at the end of life.
Physicians should endeavor to identify, understand and address the psychosocial and spiritual needs of their patients, especially as they relate to patients’ physical symptoms. Physicians should try to ensure that psychological, social and spiritual resources are available to patients, their families and intimate associates, to help them deal with the anxiety, fear and grief associated with the end of life.
Physicians should encourage patients to designate a substitute decision-maker/surrogate to make decisions that are not expressed in an advance directive. In particular, physicians should discuss the patient’s wishes regarding the approach to life-sustaining interventions as well as palliative measures that might have the additional effect of accelerating death. Because documented advance directives are sometimes not available in emergency situations, physicians should emphasize to patients the importance of discussing treatment preferences with individuals who are likely to act as substitute health care decision-makers/surrogates. Whenever possible and consented to by the patient, the patient’s substitue decision-makers/surrogates should be included in these conversations.
If a patient has decision-making capacity, his or her autonomous right to refuse any medical treatments or interventions must be respected even if the patient’s life may be shortened. Physicians should make sure that the patient is adequately treated for pain and discomfort before consent for end-of-life care is obtained in order to ensure that unnecessary physical and mental suffering do not interfere with decision making. Laws regarding the decision-making capacity of minor patients vary greatly, but discussions with the family, and child, if possible, are encouraged.
Upon a patient’s death, physicians may apply such means as are necessary to keep organs viable for transplantation, provided that they act in accordance with the ethical guidelines established in the WMA Declaration of Sydney on the Determination of Death and the Recovery of Organs. In addition, any transplantation must be in accordance with the principles in the WMA Statement on Organ and Tissue Donation.

Adopted by the 62^nd WMA General Assembly, Montevideo, Uruguay, October 2011
and rescinded and archived by the 73^nd WMA General Assembly, Berlin, Germany, October 2022

INTRODUCTION

All people have the right to high-quality, scientifically-based, and humane healthcare. Therefore, receiving appropriate end-of-life medical care must not be considered a privilege but a true right, independent of age or any other associated factors. The WMA reaffirms the principles articulated in the WMA Declaration on Terminal illness and the WMA Declaration on Euthanasia. These Declarations support and complement the Declaration on End of Life Medical Care.

Palliative care at the end of life is part of good medical care. The need for access to improved quality palliative care is great, especially in resource-poor countries. The objective of palliative care is to achieve the best possible quality of life through appropriate palliation of pain and other distressing physical symptoms, and attention to the social, psychological and spiritual needs of the patient.

Palliative care may be provided at home as well as in various levels of health care institutions.

The physician must adopt an attitude to suffering that is compassionate and humane, and act with empathy, respect and tact. Abandonment of the patient when he or she needs such care is unacceptable medical practice.

RECOMMENDATIONS

1. Pain and symptom management

1.1 It is essential to identify patients approaching the end of life as early as possible so that the physician can perform a detailed assessment of their needs. A care plan for the patient must always be developed; whenever possible, this care plan will be developed in direct consultation with the patient.

For some this process may begin months or a year before death is anticipated. It includes recognising and addressing the likelihood of pain and other distressing symptoms and providing for patients’ social, psychological and spiritual needs in the time remaining to them. The primary aim is to maintain patients’ dignity and their freedom from distressing symptoms. Care plans pay attention to keeping them as comfortable and in control as possible and recognise the importance of supporting the family and treating the body with respect after death.

1.2 Important advances in the relief of pain and other distressing symptoms have been made. The appropriate use of morphine, new analgesics, and other measures can suppress or relieve pain and other distressing symptoms in the majority of cases. The appropriate health authorities must make necessary medications accessible and available to physicians and their patients. Physician groups should develop guidelines on their appropriate use, including dose escalation and the possibility of unintended secondary effects.

1.3 In a very limited number of cases, generally in the very advanced stages of a physical illness, some symptoms may arise that are refractory to standard therapy. In such cases, palliative sedation to unconsciousness may be offered when life expectancy is a few days, as an extraordinary measure in response to suffering which the patient and clinician agree is intolerable. Palliative sedation must never be used to intentionally cause a patient’s death or without the agreement of a patient who remains mentally competent. The degree and timing of palliative sedation must be proportionate to the situation. The dosage must be carefully calculated to relieve symptoms but should still be the lowest possible to achieve a benefit.

2. Communication and consent; ethics and values

2.1 Information and communication among the patient, their family and members of the health care team is one of the fundamental pillars of quality care at the end of life. The patient should be encouraged to express his or her preferences regarding care, and his or her emotions and existential angst must be taken into consideration.

2.2 Ethically-appropriate care at the end of life should routinely promote patient autonomy and shared decision-making, and be respectful of the values of the patient and his or her family.

2.3 Physicians should directly discuss a patient’s preferences with the patient and/or the patient’s substitute health care decision maker, as appropriate. These discussions should be initiated early and routinely offered to all patients and should be revisited regularly to explore any changes patients may have in their wishes, especially as their clinical conditions change. Physicians should encourage their patients to formally document their goals, values and treatment preferences and to appoint a substitute health care decision maker with whom the patient can discuss in advance his or her values regarding health care and treatment. Patients who are in denial about the implications of their condition may not want to engage in such discussion at some stages of their illness, but should know that they can change their minds. Because documented advance directives are often not available in emergency situations, physicians should emphasize to patients the importance of discussing treatment preferences with individuals who are likely to act as substitute health care decision makers.

2.4 If a patient is capable of giving consent, care should be based on the patient’s wishes as long as preferences can be justified medically, ethically and legally. Consent needs to be based on sufficient information and dialogue, and it is the physician’s obligation to make sure that the patient is adequately treated for pain and discomfort before consent is obtained in order to assure that unnecessary physical and mental suffering do not interfere with the decision-making process.

2.5 The patient’s next-of-kin or family should be informed and involved in the decision-making process, provided the patient is not opposed to this. If the patient is unable to express consent and an advance directive is not available, the views of the health care substitute decision maker, appointed by the patient on care and treatment, must be considered.

3. Medical records and medico-legal aspects

3.1 Physicians caring for a patient in the final stages of life must carefully document treatment decisions and the reasons for choosing particular procedures, including the patient’s and family’s wishes and consent, in the progress notes of the medical records. An adequate medical record is of the utmost importance for continuity and quality of medical care in general and palliative care in particular.

3.2 The physician must also take into account that these notes may serve a medico-legal purpose, e.g., in determining the patient’s decision-making capacity.

4. Family members

It is necessary to acknowledge the importance of the family and the emotional environment of the patient. The needs of the family and other close caregivers throughout the course of the illness must be recognized and attended to. The heath care team should promote collaboration in the care of the patient and provide bereavement support, when required, after the patient’s death. Children’s and families’ needs may require special attention and competence, both when children are patients and dependents.

5. Teamwork

Palliative care is usually provided by multiprofessional and interdisciplinary teams of healthcare and non-healthcare professions. The physician must be the leader of the team, being responsible, amongst other obligations, for diagnosis and medical treatment. Continuity of care is very important. The team should do all it can to facilitate a patient’s wish to die at home, if applicable and possible.

6. Physician training

The increasing number of people who require palliative care and the increased availability of effective treatment options mean that end-of-life care issues should be an important part of undergraduate and postgraduate medical training.

7. Research and education

More research is needed to improve palliative care. This includes, but is not limited to, general medical care, specific treatments, psychological implications and organization. The WMA will support efforts to better educate physicians in the skills necessary to increase the prevalence and quality of meaningful advance care planning.

CONCLUSION

The care that a people give to dying patients, within available resources, is an indication of their degree of civilisation. As physicians representing the best humanitarian tradition, we should always commit ourselves to delivering the best possible end-of-life care.

The WMA recommends that all National Medical Associations develop a national policy on palliative care and palliative sedation based on the recommendations in this declaration.

Adopted by the 62^nd WMA General Assembly, Montevideo, Uruguay, October 2011
And amended by the 71^st WMA General Assembly (online), Cordoba, Spain, October 2020

PREAMBLE

Around the world, tens of millions of people with cancer and other diseases and conditions experience moderate to severe pain without access to adequate treatment. These people face severe suffering, often for months on end, and many eventually die in pain. Those who may not be able to adequately express their pain – such as children, people with intellectual disabilities and those with altered consciousness– and individuals and populations that have historically been undertreated for pain and pain management due to bias, are especially at risk of receiving inadequate pain treatment.

Inadequate pain treatment contributes to individual suffering physically and emotionally, but also causes huge care burdens and negative economic impact on a national level.

However, most of the suffering is unnecessary and is almost always preventable and treatable.

In most cases, pain can be stopped or relieved with inexpensive and relatively simple treatment interventions, which can dramatically improve the quality of life for patients. Sometimes, especially in severe chronic pain, psycho-emotional factors are even more significant than physiologic factors.

Pain treatment in these cases may require a multi-faceted approach to care by multidisciplinary teams.

Over the years, the use of opioids has seen significant growth in some countries. In many other areas around the world, however, access to essential pain treatment remains limited for patients in pain. Even in countries with a high volume of use, it can be difficult for specific populations to receive adequate treatment for their pain. Incomplete pain assessment or improper use of pain medication can bring about adverse drug reactions. All of these are very important and urgent issues need to be addressed.

Governments should adopt effective measures, wherever possible, for adequate pain treatment. For this goal, governments shall ensure that healthcare professionals across fields are entitled to educational training on pain evaluation and management; that the right of all patients in pain to pain treatment is not compromised due to unnecessary regulations; and that policies on the management of controlled drugs help with effective monitoring of and prevention against risks associated with controlled drugs.

RECOMMENDATIONS

Access to adequate pain treatment is a human right. Physicians, medical professionals and health care workers must offer pain assessment and pain treatment to patients with pain. Governments must provide sufficient resources and proper pain treatment regulations.
Pain is a complex perception consisting of physical, psychological, social, cultural and spiritual sufferings. Physicians, medical professionals and health care workers must offer holistic pain assessment and appropriate pain treatment, such as pharmacological and/or non-pharmacological interventions to patients with pain. All healthcare professionals should seek to fulfill the goal of effectively evaluating the pain of all patients, including pain suffered by children, cognitively impaired patients and those unable to properly express themselves. Healthcare professionals should also seek to effectively evaluate and treat pain in patients and populations who have historically been undertreated for pain due to implicit and explicit biases.
Pain treatment and control education shall be provided to healthcare professionals including physicians, other medical professionals, and other health care workers.

Education should include pain assessment, evidence-based pain control, and the efficacy and risks of painkillers. Education should include pain medicine, including the action of opioids, preventing adverse reactions, and the adjustment and conversion of the dosage of opioids. Patient-centered care should be taught to fulfill the goal of adequately stopping pain and reducing the incidence of adverse reactions. The curriculum shall be highly competence-based in design enhancing the knowledge, the attitude, and the skills of healthcare professionals while treating pain.

Education should support the development of pain and palliative specialists, in order for them to effectively support first-line physicians and other medical professionals.

Pain treatment education for medical professionals shall include the non-medicinal treatment options. Education should equip medical professionals with proper interpersonal communication skills, cultural sensitivity, and the ability to evaluate the overall pain suffered by patients at the physiological, psychological, and spiritual levels and to empower them in inter-professional practice so that professionals can work together to alleviate the pain felt by patients with and without medication.

Governments, regulators and healthcare administrators must acknowledge the consequences of pain in terms of health, productivity, and economic burden. Governments should provide ample resources and have suitable regulations governing controlled drugs.

For policies on the control of drugs, governments shall periodically review and adequately revise them to ensure the availability and accessibility of controlled drugs such as opioids. In addition, abuse and illicit use must be prevented.

Patients in pain shall be given access to effective pain medication, including opioids. Depriving them of such right is a violation of their right to health and is medically unethical.
Governments must ensure that controlled drugs, including opioids, are made available and accessible to help relieve the suffering. Relief of suffering and prevention against abuse shall be balanced in the management of controlled drugs.

Government shall provide abundant resources and create a national pain management research institute to explore issues in pain treatment and to come up with solutions, in particular:

Explore issues that become barriers to pain treatment, such as financial condition, socioeconomic status, patient race and ethnicity, urban and rural differences, logistics, insufficient training, and culture (the misunderstanding that people have about opioids, for example)
Promote the use of validated pain assessment tools.
Conduct studies of emerging therapies or non-medicinal therapies.
Establish a system and a standard procedure to record and collect pain-related data for correct statistics and monitoring. Pain-related data includes the incidence and prevalence of pain, cause of pain, burden of pain, pain treatment status, reason for pain not properly treated, and number of people with drug abuse, etc.

Governments shall prepare a national pain treatment plan to be followed in pain prevention, pain treatment, pain education, and policies on the management of controlled drugs.

The national pain treatment plan shall be evidence-based.
Governments must take into consideration opinions of policymakers, medical professionals, and the general public in order to prepare a national pain treatment plan that is extensive, practical, and forward-looking, contributing to enhanced nationwide pain treatment efficacy.

Adopted by the 39^th World Medical Assembly, Madrid, Spain, October 1987,
and reaffirmed by the 170^th WMA Council Session, Divonne-les-Bains, France, May 2005 and by the 200^th WMA Council Session, Oslo, Norway, April 2015,
and rescinded and archived by the 70^th WMA General Assembly, Tbilisi, October 2019
* This document has been replaced by the completely rewritten “WMA Declaration on Euthanasia and Physician-Assisted Suicide” (2019)

Euthanasia, that is the act of deliberately ending the life of a patient, even at the patient’s own request or at the request of close relatives, is unethical. This does not prevent the physician from respecting the desire of a patient to allow the natural process of death to follow its course in the terminal phase of sickness.