Palliative care from diagnosis to death
BMJ 2017; 356 doi: https://doi.org/10.1136/bmj.j878 (Published 27 February 2017) Cite this as: BMJ 2017;356:j878All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
The prevention is inside the palliative care concept and represents the possibility to prevent the increase of new symptoms and bad control of previously existent symptoms and crises in the palliative care patients. Since the beginning of the study of palliative care Cicely Saunders calls for the attention to act proactively to improve the control of pain to avoid its worst control and its consequences (1). The article “Palliative care from diagnosis to death” from Professor Murray and coworkers emphasizes the need to act preventively, showing evidences to support the early palliative care. Sadly in Brazil we are far from this point.
The current identification model and focus of care unfortunately cannot manage the growing demand for palliative care. The model focused in hospital care with an identification in the last phase of disease brings a health system that acts less preventively than necessary. We can assume that the inexistence of an appropriated care in an appropriated time certainly brings more suffering for sick people and their families and more costs for the health system.
This is the result of an equation elaborated above the difficulty of the provision, integration and continuity of care. As the article of Professor Murray and his colleagues defends, Early palliative care offered accordingly to the needs of the person and his family through an early identification, a good following and adequate communication, support and monitoring during all the period of disease, doesn’t matter how long that period is, posibly will cover and protect this disease people for more time. That protection is the prevention we need to understand and apply in Brazil.
Some numbers show the huge demand for changes in the actual mode of palliative care. The estimate of 30 millions of aging people with dementia in 2020 (2), 600 thousand of new cancer cases per year (3) and more than 1 million of deaths per year shows the great necessity of offering more palliative care. The last “The Quality of Death Index” (4) points poor access to palliative care for the most of population and beyond these numbers it is possible to add another situations as the low investments of Government in the health of all Brazilian population, just 4,6% of GDP in 2016, an absence of public health policy related with palliative care and a non-recognition of palliative care as a health problem.
As the article comments the use of identification tools and the recognition of trajectories can help to start to fix the actual situation of poor access of Brazilian people to palliative care. By using those tools we can identify people with palliative care physical needs on our daily routine on primary care and the other levels of attention and also think about major population strategies and policies. If the National Program of Primary Care, the Family Health Strategy (FHS), with almost 40 000 teams distributed for all country and covering 123 million of people (5) identify just the 1% of general population approaching the last year of life we could have 1,23 million of people needing palliative care without receiving it. The use of identification tools as SPICT by those teams could be a great step to improve the access to the major population who needs palliative care less complex and it´s not receiving it. Besides it, Brazil will need more specialists to solve the problem of the rise of demand of complex cases and a network structured to integrate the 3 levels of attention. Surely, using the identification tools we can think about population´s strategies to offer more palliative care.
However we need to be careful to apply coldly the identification tools (even after the boom ocurred in Brazil after the publishing of article and the fantastic video explaining the article´s content). Different cultures, different socio economics realities between the origin´s countries of the identification tools and Brazil and even inside Brazil “a country with many coutries inside” can add more people than the groups shown in the identification tools. An example: Brazil has 18% of its population living in extreme poverty (6) and the social economic condition of disease people will pressure and add social, pyschological and spiritual challenges to be identified and worked above. As the article comments Early palliative care is more than simply seing some clinical guide and apply it. The people who needs palliative care are deeper than clinical diagnosis, lines and tools. This guide will help us a lot but we need to be aware and don’t forget our Brazilian reality is particular and we need to adapt all the tools to our context.
Other point is if we apply the palliative care as a philosophy for all chronic diseases since the beginning probably more people will have some benefit on receive some palliative approach. That point brings us the prevention argument again. We need to think for Brazil education´s strategies, palliative care policies and a system of work integrating the three levels of attention but focusing on primary care and community because until that moment we have few experiences between the 40 000 FHS teams distributed for all country (7). Then discuss the application of palliative care since the diagnosis as the articles comments and study how to follow this group of patients, during years sometimes, more than six months- one year proposed by the current reasoning line and focus of research and learning. The philosophy of care needs to be above the prognostic and time questions and have to pass through all the community and levels of attention.
As showed above Brazil has many challenges to face to offer paliative care for the most of population and improve the access to this model of care. The recognition of the necessity to do it perhaps is the greatest one. The reasoning line of Early palliative care, the use of identification tools respecting our differences can offer some of the answers we need.
References:
1. Clark D. `Total pain', disciplinary power and the body in the work of Cicely Saunders, 1958±1967. Social Science & Medicine 49 1999; 727-736
2. Burlá C, Camarano AA, Kanso S, Fernandes D, Nunes R. Panorama prospectivo das demências no Brasil: um enfoque demográfico. Ciênc.saúdecoletiva [Internet]. 2013 Oct [cited 2017 Apr 12] ; 18( 10 ): 2949-2956. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232013001.... http://dx.doi.org/10.1590/S1413-81232013001000019.
3. Estimativa 2016: incidência de câncer no Brasil / Instituto Nacional de Câncer José Alencar Gomes da Silva – Rio de Janeiro: INCA, 2015.
4. The Economist and Intelligence Unit. The 2015 Quality of Death– Ranking end-of-life care across the world. 2015. Available from:https://www.eiuperspectives.economist.com/sites/default/files/2015%20EIU.... Accessed: 12/04/2017
5. Brasil. Ministério de Saúde. Departamento de Atenção Básica. Histórico Cobertura da Saúde da Família. Available from: http://dab.saude.gov.br/dab/historico_cobertura_sf/historico_cobertura_s...
6. Comissão Econômica para a América Latina e o Caribe (CEPAL). Panorama Social da América Latina, 2014. Santiago de Chile, 2014. Available from: http://repositorio.cepal.org/bitstream/handle/11362/37626/S1420729_es.pd....
7. Corrêa SR, Mazuko C, Floss M, Mitchell, G, Murray SA. Brazil: time for palliative care in the community!. EurJPalliatCare, 2016; 23(2): 94-96
Competing interests: No competing interests
We agree with Murray et al when they describe late palliative care as a missed opportunity to do better for patients, families and healthcare services (1). While their work has focused on adults, there is also a need to do better for children and young people (CYP) with life-limiting and life-threatening conditions. Just as with adults, palliative care for CYP is often delayed, with referrals to specialist palliative care services occurring very late in the course of illness, if at all (2). This is a pressing concern as the numbers of CYP who could benefit from palliative care rises (3) and because the majority of children and young people who die in the UK currently do so in an intensive care unit environment (4).
There is wide debate around how palliative care can best be delivered for CYP, and a limited evidence base and resources to support service design (5, 6). Palliative care can be considered a shared responsibility between every healthcare professional involved in the care of individuals: “palliative medicine is only going to have its greatest effect when everybody from that junior nurse or junior doctor who they meet ….. has the skills to deliver that care to them in the way that’s appropriate for that child” (Dr A Thompson: https://vimeo.com/170747606).
We are currently undertaking a longitudinal interview project with CYP who are living with life-limiting and life-threatening conditions, and their families. The relevance of Murray et al’s concept of multi-dimensional wellbeing trajectories is highly evident in our interviews, but the importance of additional trajectories that need to be considered for CYP is also clear. A trajectory for education aligns closely with, but is distinct from, psychological and social trajectories. There is also an information and knowledge trajectory which would provide insight into where CYP and their families are receiving information, and how that compares to levels of knowledge, beliefs and expectations which are shaped by experience (7).
A further consideration for CYP and adults alike, is that with advances in clinical medicine and technology, more people are surviving once incurable conditions, or longer with conditions that are still associated with a shortened life expectancy, including some cardiac conditions. We have much to learn about the lived experiences of those individuals in order that healthcare services become responsive to their multi-dimensional needs.
One final point is relates to the term “palliative care” for CYP. Through patient and public involvement work, we have found that CYP who have received services from a children’s hospice have never heard the term “palliative care” being used in relation to themselves. They report that they feel negative about the term and prefer that it isn’t used; previous research suggests similar responses from parents (8, 9). The opinions of CYP and their families towards the terms used to describe their care is an important issue that can influence access to and take-up of services, and warrants further attention.
1. Murray SA, Kendall M, Mitchell G, et al. Palliative care from diagnosis to death. Br Med J. 2017;356.
2. Niswander LM, Cromwell P, Chirico J et al. End-of-life care for children enrolled in a community-based pediatric palliative care program. J Palliat Med. 2014;17(5):589-91.
3. Fraser LK, Miller M, Hain R, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatr. 2012;129(4):e923-9.
4. Plunkett A, Parslow RC. Is it taking longer to die in paediatric intensive care in England and Wales? Arch Dis Child. 2016. doi: 10.1136/archdischild-2015-309592
5. Knapp C, Woodworth L, Wright M, et al. Pediatric Palliative Care Provision Around the World: A Systematic Review. Pediatri Blood Canc. 2011;57:361-8.
6. Mitchell S, Morris A, Bennett K, et al. Specialist paediatric palliative care services: what are the benefits? Arch Dis Child. 2017. doi:10.1136/archdischild-2016-312026
7. Bluebond-Langner M. The Private Worlds of Dying Children. Princeton N.J: Princeton University Press; 1978.
8. Monterosso L, Kristjanson L. Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliat Med. 2008;22(1):59-69.
9. Morstad BA, Yusuf F, Himelstein B. Perceptions of the term palliative care. J Palliat Med. 2006;9(5):1128-36.
Competing interests: No competing interests
In my experience, palliative care may be needed soon after diagnosis, even when the prognosis is not terminal. I was already in considerable pain when diagnosed with anal cancer which was found to have spread to lymph nodes, but my chances of survival were given as 50/50 - so I was not classed as 'terminal'.
People who suffer pain close to, or beyond, bearable limits should surely be offered effective palliative care to deal with it. In my case, the increasing pain of both disease and aggressive treatments seemed to be ignored in the hospital and home settings. Other aspects of palliative care were also absent but sorely needed as pain and illness took their toll. After the first phase of treatment, when I was sent home to be 'a bit ill' (and was banging my head on the wall with pain and unable to lift a glass of water) I seemed to fall into a gap between hospital and GP 'care' ; the latter seemed unaware of the likely effects of the treatment I was having - the former seemingly unable to acknowledge the harms of their cancer treatments. The pain I endured felt like torture since it could correctly be anticipated to return, in greater and greater strength, on a daily basis, for a prolonged period of time.
My experiences haunted me for years and resulted in a book: Nothing Personal, disturbing undercurrents in cancer care has discussion sections after each event looking at what needed to change, with research references for better/evidence-based practice. Here is the evidence of need for palliative care even from the day of diagnosis of a treatable disease (I have survived 27 years so far). 'Well tolerated by the patient' may often be found in clinicians' accounts of treatments; sadly, one has only to look at the Macmillan Cancer Support online patient forum for anal cancer patients to see that today's patients still suffer appalling, unaddressed pain. This really is unacceptable in the 21st century.
Competing interests: Author, Nothing Personal, disturbing undercurrents in cancer care, Radcliffe Publishing.
The approach outlined in the article by Murray et al has a wide relevance and not just for healthcare professionals but also encouraging such discussions with friends and family. There is no need to wait until disease onset. Such discussion is particularly applicable in the older population and can form the basis for an Advance Decision (AD). Essentially it is about the tipping point between quality and quantity, although these will interrelate in a variety of ways. “Palliative” with its origins in terminal care is the wrong word for the - often relatively fit - older population who may associate it with “giving up” and poor prognosis. “Anticipatory care” is not so threatening, apart from suggesting an aggressive proactive approach to screening and treatment which is just what many of us do not want. The old term of “taking stock” is less threatening, used widely and a way to start the conversation.
In the past few years, since reaching the age of 75, I have found the SWOT – Strengths, Weaknesses, Opportunities and Threats - framework a very useful tool and as a back-up for my AD. My emphasis now is on quality, not quantity. It is a framework which I can modify as new ailments emerge - as is happening - and gives me the chance to think through what it is about living that gives it quality. Updating anyway is a form of annual appraisal about life and opportunities as well as disease. The current majority view – and our health care is increasingly based on this – is likely to remain on the side of quantity rather than quality. Doctors, often only becoming involved after the onset of disease, tend to subscribe to this view. (Many do not: a well-known example is Dr Emmanuel – oncologist, ethicist and adviser on healthcare to Obama – who wrote an essay in 2014 on “Why I hope to die at 75” , a date he saw as flexible depending on progress.) For similar reasons doctors generally may not be the people best suited to have what can be a free-ranging and time consuming discussion. I have been even more involved with these since retirement than during my working life, which included the care of – and listening to - many patients towards the end of life.
Competing interests: No competing interests
The WHO resolution referred to by Murray et al recommends early introduction of palliative care. In the case of metastatic cancer, this remains uncommon unless poor physical performance contraindicates drug therapy. As the authors state, there is evidence that early palliative, 'best supportive care' or BSC (my preferred term) benefits both quality and quantity of life, even if used alone in metastatic cancer1. Indeed, there is considerable evidence that patients are inadequately empowered and poorly informed about the extreme rarity of cure when treated with cancer drugs2 , together with poor survival benefits (mostly in months), a high incidence of severe adverse effects and an increased risk of dying in hospital, even in intensive care .
Both patient and oncologist create unnecessary and unjustified momentum to initiate chemotherapy, sometimes also because of the latter’s conflicts of interest3. What is only rarely done is involvement of the palliative care physician at the time that treatment policy is discussed. Jointly advised by oncologist and palliative care physician – BSC alone might be a better choice in many cases. In my recent article on the ethics of cancer drugs4, I reviewed the frequently poor results of cancer drug therapy and the lack of empowerment of poorly-informed patients5. Until better drugs become available, a more balanced and informed multidisciplinary input, already at the time that treatment is being discussed should result in more ethical practice – more BSC alone in acknowledged poorly-responsive cancers, with a major consequent saving in medication costs for metastatic disease: now the commonest cause of death in many population groups. Such an approach is currently being evaluated by Dr JS Temel and colleagues at the Dana Farber Cancer Institute in Boston and similar studies in Europe are much overdue.
1. Bauman JR, Temel JS. The integration of early palliative care with oncology care: the time has come for a new tradition. J Natl Compr Canc Network 2014;12:1763-71
2. Koedoot CG, Oort FJ, de Haan RJ, Bakker PJ, de Graeff A, de Haes JC. The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are: palliative chemotherapy and watchful-waiting. Eur J Cancer 2004;40:225-35.
3. Malin JL, Weeks JC, Potosky AL, Hornbrook MC, Keating NL. Medical oncologists’ perceptions of financial incentives in cancer care. J Clin Oncol2013;31:530-5
4. Wise PH. Cancer drugs, survival, and ethics BMJ 2016; 355
:i5792
5. Gattellari M, Voigt KJ, Butow PN, Tattersall MH. When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol2002;20:503-13
Competing interests: No competing interests
Society's institutions are a mixed blessing. They provide us with colleges, hospitals, nursing homes, orphanages, and the military. But they also subject us to regimentation, which can be overwhelming, depersonalizing, and depressing. One refuge from such regimentation are chaplains, who offer much-needed emotional and spiritual care for people of all faiths. Literally and figuratively, chaplains are a godsend.
Competing interests: No competing interests
Traditional medicine distinguishes between sickness that is curable and
sickness that is incurable. A curable sickness is treated in a hospital with
curative care; while an incurable sickness is treated in a hospice with palliative
care. For example, a curable sickness, such as pneumonia, is treated in a
hospital with antibiotics, fluids, and bed rest; while an incurable sickness, such
as metastatic cancer, is treated in a hospice with pain medicine and
tranquilizers, but no anti-cancer drugs. Curative care is designed to fight
sickness, while palliative care is designed to make patients more comfortable.
This distinction between curative care and palliative care is somewhat
misleading, because both rely on pharmaceuticals, and both ignore the
relationship between diet and health. Regardless of whether a sickness is
curable or incurable, physicians must promote health and not simply treat
symptoms with pharmaceuticals.
Competing interests: No competing interests
I do not question the possibility that the offer of 'palliative care' might be helpful immediately following a terminal diagnosis: but why do we need to emphasise the difference between 'palliative' and 'curative' treatments, in the period between a terminal diagnosis and the death ? I have made this point before, in a comment to an article with a similar theme by Mason and Murray (the article and the comments can be found as ref 1, and also a reply to my comment from the authors). Surely doctors should be considering all of the treatments which might help the patient, and offering those treatments to the patient: explaining the clinical effect of an offered treatment ('this treatment will not be a cure, but it will probably help with ...', or 'these tablets should cure your chest infection') surely involves making clear to the patient what it palliative and what is curative.
As I commented in ref 1:
Why do clinicians seem to imply that 'a patient is either 'palliative' or 'not palliative'' ? Why should it be assumed that any particular patient is only being given 'palliative' (which I define as 'non-curative') treatment, or only being given 'curative' treatments ? During normal life, you might have curative and 'palliative' (normally something such as pain relief) treatments together - so why, during 'end-of-life', do we need a 'palliative label' ?
The 'rules' of 'offer the best care you are able to provide, and then do whatever the patient consents to' apply irrespective of the situation: that is the ethical and legal 'rule' whether in normal, end-of-life, or dying-phase clinical situations - this 'palliative label' runs the risk of the label of 'a palliative patient' which could serve to incorrectly reduce patient choice, and to lead various clinicians to not properly obtain Informed Consent.
Ref 1 https://www.mariecurie.org.uk/blog/gps-patients-palliative-care-planning...
Competing interests: No competing interests
Early palliative care videos now available in Spanish, Italian, French, Portuguese and Dutch
The 4 minute video we produced earlier this year summarising our BMJ analysis “Palliative care from diagnosis” has had thousands of views on Youtube and Facebook.. Working with national leaders we are now producing versions of this innovative video to help doctors, nurses and other professionals trigger the integration of palliative care in patients early in the patient’s illness trajectory. We encourage readers to use these new Spanish, Dutch, Italian and Portuguese versions which we have posted on our website. https://www.ed.ac.uk/usher/primary-palliative-care/videos/health-and-car...
To help readers use these videos for teaching and training purposes we have produced a guide to help the use of the video in group discussions. It is available at the above link. This may be useful for health-care teams considering when to start advance /anticipatory care planning and a palliative care approach, and also in undergraduate and postgraduate medical and nursing teaching. This guide although in English is very relevant to all the versions of the video, and may be translated.
“How to live and die well”. We have also now made this video based on the same BMJ analysis. It is for viewing by the general public and individual patients and their carers. It is available on https://www.ed.ac.uk/usher/primary-palliative-care/videos/patients-and-f... together with a guide to support individuals watching it, and on https://www.ed.ac.uk/usher/primary-palliative-care/videos/how-to-live-an... with a guide to support group viewing.
Let’s get palliative care integrated into the care of people with all conditions in all countries! Let’s help the general public understand how to live and die as well as possible,
Members of the European Association of Palliative Care Primary Care Reference Group
Competing interests: No competing interests