Palliative care and hospice outside of the United States
- Suresh Kumar, MBBS, DA, Dip Palmed, MA
Suresh Kumar, MBBS, DA, Dip Palmed, MA
- Director, Institute of Palliative Medicine
- Medical College, Calicut, Kerala, India
Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing serious illness. The primary tenets of palliative care are symptom management; establishing goals of care that are in keeping with the patient’s values and preferences; consistent and sustained communication between the patient and all those involved in his or her care; psychosocial, spiritual, and practical support both to patients and their family caregivers; and coordination across sites of care.
Hospice and Palliative Medicine is a recognized medical subspecialty in the United States and internationally, including in Canada, England, Ireland, Australia, and New Zealand. Many European countries are also in the process of developing certification for palliative care. Unfortunately, in other parts of the world access to quality palliative care is very limited. In one study, only 8 percent of eligible patients worldwide had access to palliative care services .
This topic will discuss palliative care and hospice services outside of the United States. A more comprehensive overview of palliative care is available separately. (See "Benefits, services, and models of subspecialty palliative care".)
Palliative care services focus mainly on noncommunicable causes of death, which bring about the great majority of deaths worldwide . Adults in need of palliative care for progressive nonmalignant disease represent the highest proportion of cases for all regions, followed by cancer. One exception to this is in Africa, where people with HIV/AIDS remain the largest group of patients in need of palliative care . The World Health Organization (WHO) estimates that the great majority (78 percent) of adults in need of end-of-life care belong to low- and middle-income countries . Similarly, the vast majority of children (98 percent) in need of palliative care at the end of life belong to low- and middle-income countries . However, the highest rates of palliative care availability and utilization among adults are in higher-income countries.
One study that included over 230 countries evaluated the availability of palliative care internationally and reported that 58 percent had one or more palliative care systems available . Separate studies indicate that specialist-level palliative care is available in only approximately 30 to 45 percent of nations [5,6].
- Worldwide palliative care alliance. The need. http://www.thewpca.org/about-hospice-and-palliative-care/the-need/ (Accessed on September 08, 2015).
- World Health Organization. Health statistics and information systems. http://www.who.int/healthinfo/global_burden_disease/projections/en/ (Accessed on September 08, 2014).
- World Health Organization. Global atlas of palliative care at the end of life. http://www.who.int/cancer/publications/palliative-care-atlas/en/ (Accessed on September 08, 2014).
- Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013; 45:1094.
- Medicine AfP. Commissioning guidance for specialist palliative Care. London: Association for Palliative Medicine, 2012.
- Palliative Care Australia. Standards for providing quality palliative care for all Australians. www.palliativecare.org.au/ Portals/46/Standards (Accessed on September 08, 2014).
- Seya MJ, Gelders SF, Achara OU, et al. A first comparison between the consumption of and the need for opioid analgesics at country, regional, and global levels. J Pain Palliat Care Pharmacother 2011; 25:6.
- AITKEN-SWAN J, PATERSON R. The cancer patient: delay in seeking advice. Br Med J 1955; 1:623.
- Abrams RD. Social casework with cancer patients. Soc Casework 1951; 52:425.
- Abrams R, Jameson G, Poehlman M, Snyder S. Terminal Care in Cancer — A Study of Two Hundred Patients Attending Boston Clinics. N Engl J Med 1945; 232:719.
- The deadly truth. A history of disease in America, Grob GN (Ed), Harvard University Press, Cambridge, MA 2002.
- National Council for Palliative Care. The distinctive characteristics of cancer., The National Council for Palliative Care, London 2006.
- Mount B. The Royal Victoria Hospital Palliative Care Service: a Canadian experience. In: Hospice care on the international scene, Saunders C, Kastenbaum R (Eds), Springer, New York 1997.
- Clark D. The development of palliative medicine in the UK and Ireland. In: Textbook of palliative medicine, Bruera E, Higginson I, Ripamonti C, von Gunten C (Eds), Hodder Arnold, London 2006. p.3.
- Recommendations on palliative care (24) http://www.eapcnet.eu/Themes/Policy/Europeaninstitutions/CouncilofEurope/COE_Recommend.aspx (Accessed on October 29, 2014).
- EAPC Atlas of Palliative Care in Europe 2013 - Full edition. http://dspace.unav.es/dspace/handle/10171/29291?locale=en (Accessed on September 08, 2014).
- Scottish Palliative Care Guidelines. http://www.palliativecareguidelines.scot.nhs.uk/ (Accessed on January 26, 2016).
- Atlas of palliative care in Latin America. http://cuidadospaliativos.org/uploads/2013/12/Atlas%20of%20Palliative%20Care%20in%20Latin%20America.pdf (Accessed on September 08, 2014).
- Hunt RW, Fazekas BS, Luke CG, et al. The coverage of cancer patients by designated palliative services: a population-based study, South Australia, 1999. Palliat Med 2002; 16:403.
- Chung Y. Palliative care in Korea: a nursing point of view. Prog Palliat Care 1999; 8:12.
- Kumar S. Models of delivering palliative and end-of-life care in India. Curr Opin Support Palliat Care 2013; 7:216.
- Morris K. Cancer? In Africa? Lancet Oncol 2003; 4:5.
- Wright M, Clark D. Hospice and palliative care development in Africa. A review of developments and challenges, Oxford University Press, Oxford 2006.
- Harding R, Stewart K, Marconi K, et al. Current HIV/AIDS end-of-life care in sub-Saharan Africa: a survey of models, services, challenges and priorities. BMC Public Health 2003; 3:33.
- Sepulveda C, Habiyambere V, Amandua J, et al. Quality care at the end of life in Africa. BMJ 2003; 327:209.
- Sixty-seventh World Health Assembly. Strengthening of palliative care as a component of comprehensive care throughout the life course. http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf (Accessed on January 26, 2016).
- Knapp C, Woodworth L, Wright M, et al. Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 2011; 57:361.
- The Quality of Death: Ranking end-of-life care across the world. www.eiu.com/sponsor/lienfoundation/qualityofdeath (Accessed on September 08, 2014).
- Mosoiu D, Ryan KM, Joranson DE, Garthwaite JP. Reform of drug control policy for palliative care in Romania. Lancet 2006; 367:2110.
- The 2015 Quality of Death Index: Ranking palliative care across the world. A report by The Economist Intelligence Unit. http://www.lienfoundation.org/sites/default/files/2015%20Quality%20of%20Death%20Report.pdf (Accessed on January 31, 2016).
- Seymour JE, French J, Richardson E. Dying matters: let's talk about it. BMJ 2010; 341:c4860.
- Delamothe T, Knapton M, Richardson E. We're all going to die. Deal with it. BMJ 2010; 341:c5028.
- Barclay S, Maher J. Having the difficult conversations about the end of life. BMJ 2010; 341:c4862.
- Knaul F. Global Task Force on Expanded Access to Cancer Care and Control. 2013. www.huffingtonpost.com/felicia-m-knaul/closing-the-global-pain-divide_b_3963838.html (Accessed on September 08, 2014).
- Milani B, Scholten W. The world medicines situation. Access to controlled medicines. Geneva: World Health Organization, 2011.
- The selection of essential drugs: report of a WHO expert committee. World Health Organ Tech Rep Ser 1977; 615:1-36.
- Global access to pain relief: Evidence for action. http://www.esmo.org/content/download/14123/252826/file/Global-Access-to-Pain-Relief-Evidence-for-Action.pdf (Accessed on October 29, 2014).
- United Nations. Single Convention on Narcotic Drugs, 1961. https://www.unodc.org/pdf/convention_1961_en.pdf (Accessed on October 29, 2014).
- World Health Organization. www.who.int/en.
- Dying Healed: Transforming End-of-Life Care Through Innovation. http://www.wish-qatar.org/reports/2013-reports.
- Berterame S, Erthal J, Thomas J, et al. Use of and barriers to access to opioid analgesics: a worldwide, regional, and national study. Lancet 2016; 387:1644.
- International Narcotics Control Board. Availability of opiates for medical needs. New York: United Nations, 1996.
- International NArcoptics Control Board. Availability of internationally controlled ddrugs: ensuring adequate access for medical and scientific purposes. Indispensible, adequately provided, and not unduly restricted. New York, United
- IAHPC Global Directory of Education in Palliative Care. http://www.hospicecare.com/global-palliative-care/global-directory-of-education-programs/results.php?idregion=0&idcountry=0&idlanguage=0.
- Medical Council of India Postgraduate Medical Education Regulations, 2000. Page 37. http://www.mciindia.org/Rules-and-Regulation/Postgraduate-Medical-Education-Regulations-2000.pdf (Accessed on January 31, 2016).
- ehospice. Palliative care news, views and inspiration from around the world. http://www.ehospice.com/ArticleView/tabid/10686/ArticleId/4314/language/en-GB/Default.aspx (Accessed on January 31, 2016).
- Bangabandhu Sheikh Mujib Medical University. Updated list of different courses/subjects of residency program available (for Phase-A) in different institutions (BSMMU and affiliated institutions) in March 2016. http://www.bsmmu.edu.bd/media/controller_notice/1444103109-51-subject%20list%20march%202016.pdf (Accessed on January 31, 2016).
- Blank RH, Merrick JC. End-of-life decision making: a cross-national study, MIT Press, Cambridge, MA 2009=7.
- PanAm Post. Colombia to Finalize Euthanasia Law in March. https://panampost.com/sabrina-martin/2015/02/19/colombia-to-finalize-euthanasia-law-in-march/ (Accessed on January 31, 2016).
- http://www.theglobeandmail.com/news/politics/quebec-first-province-to-adopt-right-to-die-legislation/article19009781/ (Accessed on February 23, 2015).
- Assisted suicide law in Germany passes despite concerns over Nazi association. http://www.ibtimes.com/assisted-suicide-law-germany-passes-despite-concerns-over-nazi-association-2172889 (Accessed on January 31, 2016).
- Lickiss JN. The development of palliative medicine in Australia/New Zealand. In: Textbook of Palliative Medicine, Bruera E, Higginson I, von Gunten CF. (Eds), Taylor and Francis, 2009. p.49.
- World laws on assisted suicide. http://www.finalexit.org/assisted_suicide_world_laws_page2.html (Accessed on January 31, 2016).
- Bocari G, Shaqiri E, Vyshka G. The actuality and the historical background of covert euthanasia in Albania. J Med Ethics 2010; 36:842. http://jme.bmj.com/content/36/12/842.abstract (Accessed on January 31, 2016).
- https://factly.in/aruna-shanbaug-euthanasia-case-woman-who-triggered-debate-on-euthanasia-in-india/ (Accessed on February 01, 2016).
- Indian Institute of Management Indore. Euthanasia: Should it be lawful or otherwise? www.iimidr.ac.in/iimi/images/Publications/cases/Euthanasia.pdf (Accessed on October 28, 2014).
- Dumont S, Jacobs P, Fassbender K, et al. Costs associated with resource utilization during the palliative phase of care: a Canadian perspective. Palliat Med 2009; 23:708.
- Jackson W. Palliative care 'a drop in the ocean' but tide is changing. The Phnom Penh Post. 11/15/2013. http://www.phnompenhpost.com/7days/palliative-care-%E2%80%98-drop-ocean%E2%80%99-tide-changing.