Illness trajectories of incurable solid cancers
BMJ 2024; 384 doi: https://doi.org/10.1136/bmj-2023-076625 (Published 01 March 2024) Cite this as: BMJ 2024;384:e076625Linked Editorial
Illness trajectories in the age of big data
Linked Practice
Using illness trajectories to inform person centred, advance care planning
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Dear Editor
The authors do tackle a very pertinent issue in cancer care [1]. They rightly ask whether there is too much care towards the end of life in cases of incurable cancer. Many non-oncologists are indeed sceptical of cytotoxic chemotherapy [2].
It is important to point out that the most important driver for potentially futile care, towards the end of life, are the patients themselves.
Multiple patient preference studies have shown that patients with advanced cancer do opt for toxic treatments for minimal benefit [3] [4].
Furthermore, patients with advanced cancer have an emotionally torrid time and they use hope to cope with the illness. Cancer treatments are the main source of hope that help them to cope with the impending end of life [5] [6]. It is a challenging situation for everyone but ultimately oncologists do respect the patient wishes in favour of continuing with palliative cancer therapy.
The newer molecular targeted therapies and immunotherapies have made the situation even more challenging because they do provide the opportunity to extend the prognosis by years in a significant minority of patients. The trajectory of illness in a particular patient is not known beforehand as there are no good survival prediction tools [1]. Hence there is further reluctance on the part of patients as well as their oncologists to give up active cancer treatment.
References
1 Geijteman ECT, Kuip EJM, Oskam J, et al. Illness trajectories of incurable solid cancers. BMJ. 2024;384:e076625.
2 Spence D. Saying no to chemotherapy. BMJ. 2013;346:f4023.
3 Slevin ML, Stubbs L, Plant HJ, et al. Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. BMJ. 1990;300:1458–60.
4 Silvestri G, Pritchard R, Welch HG. Preferences for chemotherapy in patients with advanced non-small cell lung cancer: descriptive study based on scripted interviews. BMJ. 1998;317:771–5.
5 Hope as a Strategy. Surviving Cancer. https://med.stanford.edu/survivingcancer/cancers-existential-questions/h... (accessed 3 March 2024)
6 Nierop-van Baalen C, Grypdonck M, van Hecke A, et al. Hope dies last … A qualitative study into the meaning of hope for people with cancer in the palliative phase. Eur J Cancer Care (Engl). 2016;25:570–9.
Competing interests: Advisory board work, honoraria for lectures and Conference Sponsorships from multiple Pharmaceutical companies. Private Clinical practice in addition to NHS work.
Dear Editor,
In 1980-1981 the author of this rapid response worked as a nurse at the neurosurgery of the Botkin hospital in Moscow. Patients with glioblastoma were routinely operated on, while it was believed by some staff that the treatment was generally useless, just forcing many patients to spend the rest of their lives in bed. The directive to apply the largest possible radical operations for gliomas was issued at the 1959 and especially 1966 Moscow Conferences of Neurosurgeons (Zozulya 1968). Advanced age was not regarded to be an obstacle to the radicalism (Taleisnik 1968). Justifications of surgical hyper-radicalism could be heard in private conversations among medics, for example: “The hopelessly ill are dangerous” i.e. may commit reckless acts undesirable by the state. The training of medical personnel under the imperative of readiness for war has been another motive (Jargin 2022). Many patients and their relatives access information on the Internet these days. The information available online is not monitored (ReFaey et al. 2018). In Russia, media tend to trivialize risks and discomfort associated with surgeries and other invasive procedures. Some medical men on YouTube claim that new techniques enable to radically remove deep glioblastoma without damaging brain structures: https://www.youtube.com/watch?v=-0GLCfdMv10; https://www.youtube.com/watch?v=l2kSeb92jpY (accessed February 11, 2024). Unlike other countries, public libraries are rarely used and generally contain no professional medical literature. Medical libraries are hindered from using by the general public, including even retired doctors, by unfriendly staff and technical difficulties (Murphy and Jargin 2017). Some professional publications recommending invasive procedures apply misquoting, for example: “The average life expectancy for malignant gliomas in patients receiving only conservative therapy was 9 weeks - 6.6 months” (Martynov et al. 2011) with references (Fazeny-Dörner et al. 2003; Kreth et al. 1993; Simpson et al. 1993). However, in these sources the survivals were longer. Other examples of misquoting were discussed elsewhere (Jargin 2013, 2020, 2023). Surgeries are often presented by media as something a priori beneficial, conductive to good convalescence; while side effects, risks and procedural quality are not mentioned. It has been reasonably recommended that medical institutions and professionals must work to produce more reliable content in order to improve the availability of credible health information for patients (ReFaey et al. 2018).
Fazeny-Dörner B, Wenzel C, Veitl M, Piribauer M, Rössler K, Dieckmann K, et al. Survival and prognostic factors of patients with unresectable glioblastoma multiforme. Anticancer Drugs 2003; 14(4): 305-312.
Jargin SV. Unfounded statements tending to overestimate Chernobyl consequences. J Radiol Prot 2013; 33(4): 881-884.
Jargin SV. Misconduct in medical research and practice. New York: Nova Science Publishers, 2020.
Jargin SV. Surgery without sufficient indications: an update from Russia. J Surgery 2022; 10(1): 9.
Jargin SV. Overestimation of medical consequences of low-dose radiation exposures and overtreatment of cancer. J Health Sci Res 2023; 9(1): 25-36.
Kreth FW, Warnke PC, Scheremet R, Ostertag CB. Surgical resection and radiation therapy versus biopsy and radiation therapy in the treatment of glioblastoma multiforme. J Neurosurg 1993; 78(5): 762-766.
Martynov BV, Kholiavin AI, Parfenov VE, Nizkovolos VB, Trufanov GE, Fokin VA, et al. Technique of stereotactic cryodestruction in management of patients with cerebral gliomas. Vopr Neirokhir Im NN Burdenko 2011; 75(4): 17-24.
Murphy J, Jargin S. International trends in health science librarianship part 20: Russia. Health Info Libr J 2017; 34: 92-94.
ReFaey K, Tripathi S, Yoon JW, Justice J, Kerezoudis P, Parney IF, et al. The reliability of YouTube videos in patients education for glioblastoma treatment. J Clin Neurosci 2018; 55: 1-4.
Taleisnik SL. Nekotorye osobennosti hirurgicheskih vmeshatelstv pri opuholiah golovnogo mozga u lic starshe 50 let (Some features of surgical interventions for brain tumors in people over 50 years of age). In: Hirurgicheskoe lechenie opuholei golovnogo mozga. Problemy neirohirurgii. Respublikanskii mezhvedomstvennyi sbornik (Surgical treatment of brain tumors. Problems of neurosurgery. Republican interdepartmental collection). Vol. 1. Kiev: Zdorov’ia; 1968; pp. 174-180.
Zozulya IuA, Rudchenko VV, Shcheglov VI. Hirurgicheskoe lechenie supratentorialnyh gliom metodom rezekcii dolei mozga vmeste s opuholiu (Surgical treatment of supratentorial gliomas by resection of the brain lobes along with the tumor). In: Hirurgicheskoe lechenie opuholei golovnogo mozga. Problemy neirohirurgii. Respublikanskii mezhvedomstvennyi sbornik (Surgical treatment of brain tumors. Problems of neurosurgery. Republican interdepartmental collection). Vol. 1. Kiev: Zdorov’ia; 1968; pp. 50-59.
Competing interests: No competing interests
Re: Illness trajectories of incurable solid cancers
Dear Editor
In many countries such as New Zealand, Australia, Canada where we have assisted dying services one of the hard decisions we have to make is whether people are in the last phase of their life.
Here in NZ people are eligible for an assisted death if they are over 18, a NZ citizen, have unbearable suffering which cannot be alleviated in a manner acceptable to them, able to consent to care which involves being able to weigh up options, retain information, articulate a choice without any coercion, and crucially for this paper are in the last 6 months of life.
An area for further study implied by this important paper is the impact on the operation of assisted dying services and communication for those people considering or being assessed for an assisted death.
I understand this is a service being debated in the UK, this paper presents an important concept for consideration in that debate.
Yours sincerely,
Dr Jo Scott-Jones
Competing interests: No competing interests