Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
Addressing suffering involves taking care of issues beyond physical symptoms. Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling. It offers a support system to help patients live as actively as possible until death.
Palliative care is explicitly recognized under the human right to health. It should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individuals.
Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.
Pain and difficulty in breathing are two of the most frequent and serious symptoms experienced by patients in need of palliative care. For example, 80% of patients with AIDS or cancer, and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate to severe pain at the end of their lives. Opioids are essential for managing pain.
Opioids can also alleviate other common distressing physical symptoms including breathlessness. Controlling such symptoms at an early stage is an ethical duty to relieve suffering and to respect a person’s dignity.
Each year an estimated 40 million people are in need of palliative care, 78% of whom live in low- and middle-income countries. For children, 98% of those needing palliative care live in low- and middle-income countries with almost half of them living in Africa.
Worldwide, a number of significant barriers must be overcome to address the unmet need for palliative care:
- national health policies and systems often do not include palliative care at all;
- training on palliative care for health professionals is often limited or non-existent; and
- population access to opioid pain relief is inadequate and fails to meet international conventions on access to essential medicines.
According to a WHO survey relating to noncommunicable diseases conducted among 194 Member States in 2019: funding for palliative care was available in 68% of countries and only 40% of countries reported that the services reached at least half of patients in need (1).
The International Narcotics Control Board found that in 2018, 79 per cent of the world’s population, mainly people in low- and middle-income countries, consumed only 13 per cent of the total amount of morphine used for the management of pain and suffering, or 1 per cent of the 388 tons of morphine manufactured worldwide. Although that was an improvement over 2014, when 80 per cent of the world’s population consumed only 9.5 per cent of the morphine used for the management of pain and suffering, the disparity in the consumption of narcotic drugs for palliative care between low- and middle-income countries and high-income countries continues to be a matter of concern (2).
Other barriers to palliative care include:
- lack of awareness among policy-makers, health professionals and the public about what palliative care is, and the benefits it can offer patients and health systems;
- cultural and social barriers, such as beliefs about death and dying;
- misconceptions about palliative care, such as that it is only for patients with cancer, or for the last weeks of life; and
- misconceptions that improving access to opioid analgesia will lead to increased substance abuse.
National health systems are responsible for including palliative care in the continuum of care for people with chronic and life-threatening conditions, linking it to prevention, early detection and treatment programmes. This includes, as a minimum, the following components:
- health system policies that integrate palliative care services into the structure and financing of national health-care systems at all levels of care;
- policies for strengthening and expanding human resources, including training of existing health professionals, embedding palliative care into the core curricula of all new health professionals, as well as educating volunteers and the public; and
- a medicines policy which ensures the availability of essential medicines for managing symptoms, in particular opioid analgesics for the relief of pain and respiratory distress.
Palliative care is most effective when considered early in the course of the illness. Early palliative care not only improves quality of life for patients but also reduces unnecessary hospitalizations and use of health-care services.
Palliative care needs to be provided in accordance with the principles of universal health coverage. All people, irrespective of income, disease type or age, should have access to a nationally- determined set of basic health services, including palliative care. Financial and social protection systems need to take into account the human right to palliative care for poor and marginalized population groups.
As part of multidisciplinary teams, the nursing workforce should be trained in palliativecare skills, especially those who work with patients with serious illness.
Specialist palliative care is one component of palliative care service delivery. But a sustainable, quality and accessible palliative care system needs to be integrated into primary health care, community and home-based care, as well as supporting care providers such as family and community volunteers. Providing palliative care should be considered an ethical duty for health professionals.
Palliative care medicines, including those for pain relief, are included in WHO Essential Medicines List and the WHO Essential Medicines List for Children. Palliative care is recognized in key global mandates and strategies on universal health coverage, noncommunicable diseases, and people-centred and integrated health services. WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents were released in 2019 (3).
In 2014, the first ever global resolution on palliative care, World Health Assembly resolution WHA67.19, called upon WHO and Member States to improve access to palliative care as a core component of health systems, with an emphasis on primary health care and community/home-based care. WHO’s work to strengthen palliative care focuses on the following areas:
- integrating palliative care into all relevant global disease control and health system plans;
- developing guidelines and tools on integrated palliative care across disease groups and levels of care, addressing ethical issues related to the provision of comprehensive palliative care;
- supporting Member States in improving access to palliative care medicines through improved national regulations and delivery systems;
- a special focus on palliative care for people living with HIV, including development of guidelines;
- promoting increased access to palliative care for children (in collaboration with UNICEF);
- monitoring global palliative care access and evaluating progress made in palliative care programmes;
- developing indicators for evaluating palliative care services;
- encouraging adequate resources for palliative care programmes and research, especially in resource-limited countries; and
- building evidence of models of palliative care that are effective in low- and middle-income settings.
(1) Assessing national capacity for the prevention and control of noncommunicable diseases: report of the 2019 global survey. Geneva: World Health Organization; 2020. Licence: CC BY-NC-SA 3.0 IGO.
(2) The Report of the International Narcotics Control Board for 2019 (E/INCB/2019/1) //www.incb.org/documents/Narcotic-Drugs/Technical-Publications/2019/Narcotic_Drugs_Technical_Publication_2019_web.pdf
(3) WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents. //www.who.int/publications/i/item/who-guidelines-for-the-pharmacological-and-radiotherapeutic-management-of-cancer-pain-in-adults-and-adolescents
Palliative (pal-lee-uh-tiv) care is a specialized form of care that provides symptom relief, comfort and support to individuals living with serious illnesses. It also provides support to caregivers and those impacted by a loved one’s condition.
Palliative care complements the care you receive from the providers in charge of your care plan.
Your care team works to deliver the best care outcomes (results) available for your condition. Palliative care helps you live more comfortably — with the medical, social and emotional support needed to cope with having a serious illness.
You can receive palliative care no matter your age, prognosis or whether you’re receiving treatments.
What exactly does palliative care mean?
Palliative comes from the Latin word, palliare, which means “to cloak.” The word’s origins provide clues about the role of palliative care. Imagine an extra layer of comfort and protection shielding you from the harms associated with illness. This support is what palliative care is all about.
Is palliative care the same as end-of-life (hospice) care?
No. Palliative care refers to relieving the symptoms of an incurable medical condition. Its focus is on easing stress and improving overall quality of life. Unlike hospice — which people often associate with end-of-life care — palliative care can benefit people of any age and at any stage of a serious illness.
Who needs palliative care?
People with various conditions receive palliative care. Among many others, these conditions include:
Who provides palliative care?
Palliative care teams include medical providers and other specialists who can help you manage symptoms. They can also help you navigate the added stress and responsibilities that often accompany serious illnesses.
Your care team may include:
- Doctors.
- Nurses.
- Social workers.
- Nutritionists.
- Financial advisors.
- Spiritual advisors (chaplains).
Where can I receive palliative care?
Depending on the resources available in your area, you can receive palliative care in a variety of locations, including:
- Home.
- Assisted living facility.
- In a nursing home.
- Outpatient clinic.
- Hospital.
What types of support does palliative care provide?
Palliative care includes various forms of support across multiple fronts. Palliative care supplements your medical care. It can also provide social, emotional and spiritual support. Palliative care can help you address practical concerns like healthcare costs and legal planning.
Symptom relief
Palliative care can help improve symptoms affecting your physical, mental and emotional well-being. Your palliative care team may deliver care directly. They may also teach you strategies you can use every day to feel better.
Palliative care can help with:
Your palliative care team may provide:
- Tips for improving sleep.
- Cognitive exercises.
- Relaxation exercises.
- Breathing exercises.
- Nutrition guidance.
- Exercise guidance.
- Talk therapy.
- Healing touch.
- Meditation.
- Massage.
Palliative care providers can also refer you to specialists if you need additional care.
Education and advocacy
Your palliative care team can help you better understand your condition, including how it may impact your life in the future. They can help you weigh treatment options, including what kind of treatment you’d like to pursue. The more informed you are, the more you can make care decisions aligned with your values, goals and preferences.
Your palliative care team can help communicate these values, goals and preferences to your other providers so that you receive care on your terms.
Social support
Palliative care specialists can help build a support network that makes coping with illness easier for the person with the condition and their caregivers. Many caregivers face stress and strain that can harm their physical and mental health — palliative care can ease the strain.
Your palliative care team can connect you with support groups and community resources. They can help you communicate with family members or provide family counseling. They can also organize friends and family members to help with caretaking responsibilities (filling prescriptions, getting to and from appointments, etc.).
Palliative care can provide support whether the condition affects:
- You.
- Your child.
- Your parent.
- Your spouse or life partner.
- Another close friend or loved one.
Spiritual support
Palliative care may include spiritual care, depending on your beliefs and preferences. Regular visits with a chaplain, religious leader or other spiritual advisors can be an important part of processing your illness’s impact on your life. As a part of palliative care, spiritual care may also guide your treatment preferences.
Financial and legal support
Your palliative care team can often connect you with resources to relieve the legal and financial stressors that often accompany having a serious illness. It can help with decision-making surrounding:
- Costs. Palliative care support may involve helping you understand resources available to help cover expenses. Most private insurers and Medicare plans cover palliative care costs either partially or fully. Palliative care can connect you with a financial advisor to help with financial planning.
- Living arrangements. Support includes planning for where you’ll live during your illness, including at home, with a loved one, or in an assisted living facility or nursing home.
- Legal documents. Palliative care can connect you with legal resources to help with power of attorney documents and living wills.
When is it time for palliative care?
There isn’t one set time for when someone should be offered palliative care. Many people opt for palliative care once they receive a serious diagnosis. Seeking care early on can help you plan for what’s to come.
Speak to your provider about whether they’d recommend palliative care for you.
What are the benefits of palliative care?
Palliative care empowers you to make better care decisions that positively impact your life. It can improve healthcare-related outcomes, too. Research has shown that palliative care is associated with:
- Longer life expectancy.
- Less anxiety and depression.
- Improved patient and caregiver satisfaction.
How can I get palliative care?
You’ll need a referral from your provider to receive palliative care. In some instances, your provider may recommend it. If not, don’t be afraid to bring up the topic. Mention that you’re interested in learning more about palliative care, including whether you’re a good candidate and what resources are available.
A note from Cleveland Clinic
Living with a serious illness can take a toll on your mind, body, relationships — and many other aspects of life. The demands can be overwhelming. Palliative care exists to ease multiple burdens associated with having a serious disease. Speak with your provider if you’d like to learn more about palliative care available to you or a loved one. Resources may be available that can help provide you the comfort and support needed to live your life more fully.