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“One can die, but cannot fall ill”– A Survey on how costs may affect choice of therapy in Singapore

17 Apr, 12 | by Assistant Editor

An article by Song Chiek Quah of the National Cancer Centre in Singapore

 

Introduction

Continued advances in medical care in the recent years have given some hope to patients afflicted with diseases that, in the past, have poor prognoses. However it would seem that hope comes at a price, at least within the Singaporean context. This paper will explicate this issue using the example of patients with Recurrent Head and Neck Squamous Cell Carcinoma deemed inoperable after Radical Radiotherapy and in whom chemotherapy is liable to render poor results

For these patients the advent of two new therapies offers a glimmer of hope. The first of these treatments comes in the form of the addition of cetuximab (Erbitux, Merck), a monoclonal antibody to Epidermal Growth Factor Receptor (EGFR), to standard platinum-based chemotherapy. The results within the EXTREME study revealed an increased median survival by 2.5months.[1] The second arises from Phase II studies in Finland and Japan using Boron Neutron Capture Therapy (BNCT) which have also shown improvement in the median survival in this group of patients.[2,3] BNCT is a form of tumour-selective therapy based on the nuclear fission reaction that occurs when boron-10 is irradiated with low-energy thermal neutrons to yield high linear energy transfer α particles and recoiling lithium-7 nuclei.

Both these new therapies are costly and within a society where heavily subsidized care costs are borne by patients, concerns arise as to whether such interventions may lie outside the reach of many Singaporeans.[4] To be clear, Singapore employs a novel health care system that employs shared health care responsibility. This is to suggest that
on the surface, the government through heavy subsidization of health care costs attempts to share and offset the care costs of a patient whilst entrusting individuals with some responsibility for their own health care needs.[4] This subsidization then represents the first tier of this novel health care system.[4]

The second tier is Medisave, a mandatory medical savings account designated for future medical needs into which employed Singaporeans and their employers contribute monthly.[4] The third is Medishield, a low-cost catastrophic illness insurance scheme designed to help meet medical expenses for major illnesses or long hospital stay. Premiums can be paid from individual Medisave.[4] The last tier is Medifund, an endowment fund set up to assist needy Singaporeans who are unable to pay for their medical expenses, despite subsidies, Medisave and Medishield.[4]

A common perception as a result of such a personalized savings account is that most people view this money, earmarked as it may be, as their own money, thus dipping into their own pocket to cover costs, can be particularly unpalatable to some. This results in a common lament by Singaporeans is that “One may die, but cannot fall ill”, as the latter can incur a substantial financial bill. This study attempts to explore if this perception warrants merit.

 

Study Population

This study approved by the Singhealth Centralised Institutional Research Board with the reference number 2009/806/B. Invited nurses, radiotherapists, research coordinators and doctors employed atNational Cancer Center,Singapore, participated in this study. This questionnaire study was carried out over a 6 month period from Dec 2009 to May 2010

Survey

A 3-page survey was designed (see Figure_1). Participants were invited to complete it in the presence of the author, in order to facilitate discussions around the hypothetical situation in which they had locally recurrent, inoperable, previously irradiated, non-metastatic head and neck cancers. They were then presented with details of three different treatment options, which include the toxicities of the treatment, the treatment duration as well as the known published median survival of the treatment. These treatment options were labelled as:

  • Standard Treatment – Chemotherapy (ST), which is based on six cycles of combination chemotherapy using cisplatin and 5-fluorouracil
  • New Treatment – Combined Chemotherapy and Targeted Therapy (NT), which is based on the successful addition of cetuximab to standard chemotherapy as shown in the EXTREME study.[1] The number of cycles of the targeted therapy was based on the average reported in the EXTREME study
  • Experimental Treatment – Particle Radiation Therapy (ET), based on Boron Neutron Capture Therapy. The treatment details and efficacy were obtained from the published papers by Kankaanranta and Kato.[2,3]

The participants were asked to choose one of the above three treatment options in each of the following three similar scenarios that differed only in the cost of the treatment:

  • In scenario I, the costs presented were based on actual institutional costs, though they did not include the costs of ancillary, palliative and supportive care. For ST, the cost of treatment included the costs for six cycles of cisplatin and 5-flurorouracil combination therapy. Similarly for NT, the average number of cycles of cetuximab, determined from the published results of the EXTREME study. For ET, travel costs, board and lodgings in the vicinity ofHelsinkiUniversityHospitalwas included. Here, the cost of BNCT was established after a correspondence with Boneca Corporation (May 2009), who oversees BNCT therapy inFinland. The toxicity profile and the median survival were obtained from the respective published sources.
  • In scenario II, the cost of NT and ET were both reduced, to simulate the effect of partial sponsorship or subsidy. The cost of ET was reduced to cover the airfares and the hotel stay for the treatment. The cost of NT was reduced to match that of ET.
  • In scenario III, the costs of all three treatments were made to be free, to simulate total sponsorship of therapy.

 

In essence, the only difference between all three scenarios was the cost of treatment.

In each scenario, the participants were also asked the reason for their choice of therapy. Demographics data was collected.

The author was present throughout when each participant completed the survey, to explain what the survey was about, the details of all three treatments and to clarify any doubts. The exact nature of each treatment such as chemotherapy regime, which targeted agent and what type of particle therapy, was only furnished upon direct enquiry.

RESULTS

139 out of 151 healthcare workers responded to the survey, giving a response rate of 92%. 85% of responders were female and the median age of responders was 31 years old. 40.3% were nurses, 29.5% were radiotherapists, 12.2% were clinical research coordinators and 8.6% were doctors. The remaining 13 responders (9.4%) included dosimetrists, administrator and a physicist. The respondents in all the groups had worked for a median of 7 years.

Figure 2 illustrates the differing proportion of subjects who chose each treatment in each scenario. A chi-squared test of independence was performed to examine the relation between cost of treatment and the proportion of people that chose that treatment. The relationship between these variables were significant, C2 (4, N=139) = 171.15, p < 0.0001. The subjects were more likely to choose new or experimental  treatments if their costs are lower, best exemplified by the findings was that most people (78.4%) chose the cheaper ST in Scenario I while most (80.6%) would chose ET in scenario III.

Cost was the reason majority (91.7%) of people chose ST in Scenario I (Figure 3), while the longer Median Survival was the reason majority (69.6%) of people chose ET in Scenario III. (Figure 4)

DISCUSSION

This study was designed to elucidate cost considerations in decision making and indeed the only difference between the three scenarios presented were costs considerations. The most striking finding was that as the cost deceased, there was an increase in the proportion of people who viewed median survival rate conferred by the treatment as their main priority. It seems that many participants would forego treatments that can yield a longer survival because of high prohibitive costs; and the increase in the proportion of participants who would consider the newer technologies after their prices were cut in Scenario II and III does appear to reinforce this point.

According to an analysis by global consulting firm Watson Wyatt, “Singaporeis generally acknowledged as having one of the most successful healthcare systems in the world, in terms of both efficiency in financing and the results achieved in community health outcomes.”[5] Despite Singapore’s healthcare’s mixed financing system, with multiple tiers of protection to ensure that no Singaporean is denied access to basic healthcare because of affordability issues, this survey suggests that such a system is not without drawbacks. In fact, this survey reinforces the general notion, as well as numerous anecdotal experiences recounted by healthcare professionals, that some patients would opt for no treatment, rather than to pay the excessive costs associated with today’s treatment. It is vexatious indeed to know that within such a “successful” healthcare system, there are Singaporeans who refuse treatment, for the perverse reason of not being able to afford the price of new treatments.

The findings showed that participants are willing to consider newer treatments but would only pay a fraction of the current price of these new treatments. Can such price reductions be conceivably achieved? The author believes so. In the course of writing this manuscript, the author’s institution had already decreased the cost of cetuximab by 25%. Similarly, the international BNCT community, in tandem with local initiatives, can work together to reduce the travel, accommodation and care costs involved, making BNCT more accessible. In addition, investment should be made into the research and development of accelerator-based neutron sources to provide the low energy neutrons required for the BNCT reactions. These are generally considered to be cheaper and safer than nuclear reactors, which have hitherto been the standard neutron sources for BNCT, making such novel treatments more accessible.

The next logical questions will then be: Should such treatments be made more affordable and thus, more accessible? Opponents of such a move believe that an individual should assume responsibility for their own health, and thus their own healthcare expenditure, rather than reliance on the state. They believe that illnesses are the consequence by unhealthy lifestyles, which could have been avoided in the first place. On the other hand, since millions of dollars have been spent on developing new technologies and conducting trials to show that they benefit patients, it does not seem logical to deprive similar patients, who are not enrolled onto clinical trials, the same state-of-the-art technology, because they cannot afford it. As such, ways should be explored to remove the biggest obstacle to accessing these newer technologies – cost – especially if these new technologies have significant advantages over conventional standard ones, in terms of treatment efficacy and morbidity. There is probably no perfect healthcare financing system that can resolve this argument, but suffice to say, both opposing views warrant merit, just as the Jedi Master Obi-Wan Kenobi pointed out: “Many of the truths we cling to depend greatly on our own point of view.”

Limitations

The most obvious limitation of this study was the fact that the study population was the healthcare workers in our institution that was not representative of the general population. However, they are themselves subject to the same considerations that most patients have within such settings leaving their responses not altogether incommensurable.

On another point, concerns about the validity of hypothetical scenarios within this setting have also been raised. Yet for the most part such scenarios are regularly utilized within such wide settings as Advanced Care Planning (ACP) and goals of care discussions to great effect.[6] Such discussions involve making healthcare decisions in advance so that a person is not put through treatments that he or she does not want. During these discussions, scenarios representative of the range of prognosis and disabilities are presented. Through such a range of scenarios, it is possible to note when the patient’s preferences change, allowing the physician to identify the patient’s personal preferences and values. In this study, it was through a similar method that identified how people view their lives with respect healthcare costs.

Conclusion

The phrase “One can die, but cannot fall sick” refers to the prevailing notion amongst Singaporean that it is more affordable to withhold treatment and await death than to pay for high healthcare costs. This survey suggests that such a notion may well be a true reflection of the sentiments amongst its participants. It also reminds physicians that costs can play a significant role in a person’s choice of treatment. Until the issue of high healthcare costs is adequately addressed, a plethora of questions have no easy answer. Is Mr X, who declined treatment for his illness doing it out of misplaced altruism? Is Ms Y, who decided to extubate her comatosed father, doing it in the best interest of the latter or to decrease the costs of staying in an intensive care unit?  It is indeed a difficult walk through the minefield of medical ethics and financial burden.  But it is a walk that needs to be taken to avoid a situation where the wealthy “have-lots” have a choice of being treated with the “best there is”, while the impoverished “have-nots” are relegated to just waiting for their meeting with the Grim Reaper.

 

ACKNOWLEDGMENTS

The author would like to thank all who participated in the survey. The author also thanks Dr Lalit Krishna, Dr Tian Rui Siow, Dr Kiattisa A/P Sommat and Ms Sumytra Menon for reading the initial drafts of the manuscript and their helpful comments.

Reference List

1        Vermorken JB, Mesia R, Rivera F et al. Platinum-Based Chemotherapy plus Cetuximab in Head and Neck Cancer. N Engl J Med 2008;359:1116-1127.

2        Kankaanranta L, Seppälä T, Koivunoro H et al. Boron Neutron Capture Therapy In The Treatment Of Locally Recurred Head And Neck Cancer. Int J Radiation Oncology Biol Phys 2007;69:475–482.

3        Kato I, Fujita Y, Maruhashi A et al. Effectivness of boron neutron capture therapy for recurrent head and neck malignancies. Appl Radiat Isot 2009;67(6-7 Suppl):S37-S42.

4        Cost and financing. Ministry ofHealth,Singapore. Last Updated 19 Dec 2011. Available at: http://www.moh.gov.sg/content/moh_web/home/costs_and_financing.html. Accessed 8 Jan 2012.

5        Tucci J. TheSingaporehealth system – achieving positive health outcomes with low expenditure. Watson Wyatt Healthcare Market Review, October 2004. Available at: http://www.watsonwyatt.com/europe/pubs/healthcare/render2.asp?ID=13850 Accessed 8 Jan 2012.

6        Emanuel LL, Danis M, Pearlman RA et al. Advanced Care Planning as a Process: Structuring the Discussions in Practice. J Am Geriatr Soc 1995;43:440-446

Studies of interest in Supportive and Palliative care on the CancerHelp UK clinical trials database

29 Mar, 12 | by Emma

Introduction

Do your cancer patients ever ask you about clinical trials?

If so, you could show them the CancerHelp UK clinical trials database (http://cancerhelp.cancerresearchuk.org/trials/trials-search/) which is part of the comprehensive patient information website of Cancer Research UK.  This unique service was started over 10 years ago and provides information about UK cancer trials and studies, all in plain English, for ease of understanding. The service is not a route for recruitment, but can help doctors to discuss studies that may be available and help patients make a fully informed decision about their next steps. Since a redesign of the site in 2009, details now remain on the database after trials have closed to recruitment, and brief lay summaries of results are added when available.

By working with a wide range of trial teams, it has been possible to include a large number of studies on the site. Studies range from first-in-man trials of investigational drugs and early studies of new technologies, to studies looking at symptom control and management of treatment side effects. There are also studies looking at prevention, risks and causes, screening and diagnostic tests, but the focus of this article is on studies into controlling symptoms, managing treatment side effects, support and information. At the time of writing, there were more than 100 summaries of studies listed on the database in the areas of symptom control, treatment side effects, support and information.

Background

Following a review of the literature in 2010, White & Hardy [1] acknowledged the challenges of research in palliative care, but concluded that patients are interested in participating in research and may benefit from doing so.  If patients (or their carers) want to find out more about research in general, or a specific study they may be aware of, it is important to be able to access appropriate information.

The NHS Constitution (2009) [2] pledges to ensure that patients from every part of the UK are made aware of research of particular relevance to them. Initiatives such as the UK Clinical Trials Gateway (http://www.ukctg.nihr.ac.uk/whatis.aspx) are helping the Government to meet this commitment, by providing access to a large number of trials in the UK.  However, the information accessed via the UKCTG is from the ISCRTN register (http://www.controlled-trials.com/isrctn/) and ClinicalTrials.gov registers.

Unlike these registers, which contain trial registration datasets, the summaries on CancerHelp UK are written primarily for a lay audience. Patients and their carers can read about the aims of a study in language that is easy for them to follow. The functionality of the site also allows them to see where the study is taking place and to read about extra hospital visits that participation would entail. These can be particularly important issues for consideration in the palliative care setting, as patients may be fatigued or have co-morbidities, making travel more difficult for them.

Type of information

The information is useful for both health care professionals and people affected by cancer. It is written in a sensitive way with no assumptions made about knowledge of jargon.  CancerHelp UK is accredited by the Information Standard which serves as a marker of quality for evidence based health and social care information.

The trial summaries are intentionally brief, but medical terms are explained and there are links from the trial summaries to supporting information on the website and to the site’s comprehensive glossary.

Every trial summary is approved by the team running the trial before going live on the site and the details of each open trial are regularly updated. So users can be confident that the content will be comprehensive, accurate and easy to understand.

All the entries on the database are written in house by the site’s team of specialist cancer nurses, all of whom have trained in the use of plain English. There are currently over 400 open trials listed.  Each trial summary includes the aim of the trial, eligibility and exclusion criteria, trial design, information about hospital visits and side effects, a list of UK locations where the trial is taking place, the name of the Chief Investigator and details of organisations supporting the trial.

The database does not only include Cancer Research UK sponsored and funded trials.  It has all types and phases of studies supported by a variety of organisations, including a growing number of pharmaceutical companies. Each month there are more than 25,000 page views of trial summaries.

Using the database

Many visitors to the database use the quick trials search (http://cancerhelp.cancerresearchuk.org/trials/) to find studies they may be interested in. This offers a drop down list of cancer types and a free text search box.  Early and subsequent user testing of the trials database showed that cancer type was the main parameter that patients preferred to search on.  There is also an advanced search (http://cancerhelp.cancerresearchuk.org/trials/AdvancedSearch/) offering additional drop down menus of trial types, treatment types, trial phases and location. Using this search, it is possible to find studies that are taking place in your local area looking at symptom control, management of treatment side effects or support and information.

Symptom control studies currently listed on the site include trials looking at relieving breathlessness, the treatment of bone and neuropathic pain, and the use of urokinase in pleurodesis, as well as a study looking at how breast cancer affects wellbeing and quality of life.

Trials classified as ‘support and information’ currently include a study looking at how people cope after a cancer diagnosis, a study to identify the needs of people living long term with cancer and a pilot study looking at a practical support programme for older people having chemotherapy.

Current trials looking at treatment side effects include studies looking at the effective management of side effects following radiotherapy to the bowel and a bowel management intervention following rectal cancer treatment, as well as studies looking at detecting and treating lymphoedema.

Links with other sources of information 

It should be acknowledged that there are a number of websites where people may find information about trials taking place in the UK.  The CancerHelp UK team have worked with other organisations to link between these sources to enable people to access information that is most appropriate for them. The UK Clinical Research Network Study Portfolio provides information about a large number of studies (including studies still in set up), but the information is not written specifically for a lay audience. For cancer studies that have opened to recruitment, the record usually includes a link to the plain English summary on CancerHelp UK as an option for patients to access. The CancerHelp UK team alert the Portfolio Administrator when a plain English summary is put on the site so that this link can be added straight away.

Another collaborative initiative has led to trials listed on the International Standard Randomised Controlled Trial Number register including details of a link to the lay summary on the CancerHelp UK trials database.  It is also possible to enter an ISCRTN into the free text search box on CancerHelp UK, to search for the related plain English summary.

Conclusion

As well as the individual summaries of studies, the website includes general information about trials and research to help people understand more about different types of studies, how they are planned and run, and what taking part in a trial means.  Cancer Research UK produces a popular leaflet about clinical trials, based on this information which includes details of how to access the clinical trials database. This can be downloaded or ordered free online (http://publications.cancerresearchuk.org/publicationformat/formatleaflet/trialsleaflet.html).

The CancerHelp UK clinical trials database offers an easily accessible way of finding information about current and closed cancer trials. The summaries can be useful for both patients who may be interested in taking part in research and for health care professionals. Studies looking at controlling symptoms, managing side effects, support and information are likely to be the most relevant in the palliative care setting.

References

1 White C, Hardy J. What do palliative care patients and their relatives think about research in palliative care? — a systematic review. Support Care Cancer 2010;18:905 -911

2 Department of Health. The Handbook to the NHS Constitution, London; DH Publications 2009:51

By Deborah Rodbard, Cancer Research UK.

‘Holding the baby’ at the end of life

10 Mar, 11 | by BMJ

J Gibbins,1 C Reid,2 R McCoubrie2

1SpR Palliative Medicine, Department of Palliative Medicine, Bristol Haematology & Oncology Centre, Horfield, Bristol, UK

2Department of Palliative Medicine, Bristol Haematology & Oncology Centre, Horfield, Bristol, UK

Correspondence to Dr Jane Gibbins; janegibbins@hotmail.com

Abstract

Although there are obvious differences in caring for people at the extremes of life (newborns and the dying), there are many principles that can be applied to both—for example, the theory–practice gap, dealing with distress, ‘We’re only human,’ ‘It’s easier with experience’ and ‘It doesn’t have to be complicated.’ These will be presented and discussed. While tending to my newborn in the middle of the night, it dawned on me that there are striking similarities in parenting newborn babies and caring for patients who are dying. Ruminating on this thought with my colleagues who have experience in caring for newborns, the dying and helping others do so the same, our thoughts concurred. Although there are obvious differences in caring for people at these two extremes of life, there are many principles that can be applied to both.

Theory–practice gap

For first-time parents, there is such a huge theory–practice gap—you can read all the key parenting books—Gina (Ford) or Miriam (Stoppard), attend antenatal classes, and get advice from friends and family, but it does not really make any sense until you are actually doing it. Likewise, at medical school, you can read and be taught all of the theory, but you do not really learn the nuts and bolts of how to care for someone who is dying until you are doing it in practice. A newly qualified doctor interviewed last year as part of a research project in our department explained, ‘You learn by doing really don’t you? So it’s something you need to actually work through I think, not just be taught.’

Dealing with distress

Whether you are caring for your unsettled newborn or called to see a distressed imminently dying patient in the middle of the night, it is likely that neither will be able to tell you coherently what is the matter. It is up to you as parent or healthcare professional to do a root-cause analysis through a process of elimination, application of theoretical knowledge and common sense, and, if all else fails, an ‘educated guess.’ Once you have a theory as to what is causing the distress, you can do something to try and solve the problem or ease the discomfort.

It would be unthinkable to blindly resort to sedation to stop a baby crying, and in the same way, we should consider reversible causes for agitation in a dying patient before reaching for midazolam. The physical symptoms to consider for the dying patient and the newborn baby can be similar; are they in pain (or colic), have they had too much opioid (or too much milk), are they hallucinating (or have had a bad dream), have they got a blocked catheter (or soiled nappy), or have they dropped something they are physically or psychologically dependent on such as their oxygen mask (or dummy)? Or is the patient genuinely terminally agitated with no obvious reversible cause, in which case turning to pharmacotherapy is entirely reasonable?

We’re only human

There can also be an emotional component to caring for people at the beginning and at the end of life. In our study, junior doctors talked about the emotions evoked by this part of their role and how their emotions could skew their ability to think logically.

Because the last thing you want to do is break down when you really need to be thinking clearly and making good decisions, and helping and supporting them. You don’t want to be going ‘Oh my word, I have never felt like this before’ or ‘Help, you know, what do I do next?’

Most of us who have survived the early days of parenting will perhaps look back with a combination of nostalgia and ‘Thank God that’s over!’ But we came through it relatively unscathed. For some, there will have been short-term pain—the sleeplessness, the anxiety when they are not settling that there might be something wrong with them, and worrying about doing the right thing. But for the most part, we succeeded in the parenting and we learnt how to do it on the job.

It’s easier with experience

From our experience, parenting the second or third baby did not bring with it the same level of anxiety as being a first-time parent. Having survived and succeeded once, we were able to approach the next baby with a repertoire of skills and strategies learnt from past experience. In the same way, actively engaging in the care of imminently dying patients allows confidence to be gained as well as greater knowledge of pain and symptom control.

It doesn’t have to be complicated

Sometimes, all a baby needs is comfort—just hearing their parent’s voice or seeing their parent can settle them. Similarly, with experience, doctors may find that in some circumstances, words of comfort and ‘being there’ for the patient and their carers may be all that is required.

The bottom line is, as a new parent or new F1, you are the first port of call whether you like it or not, and the patient/baby is relying on you to do something to make the situation better. The learning happens by being there and getting involved. However, to do this effectively, it is important to have armed yourself with the theoretical knowledge of how to handle the situation from the books, and then do not be afraid, think logically (recognise your emotions), use common sense and do not give up until the situation is under control. If it becomes too overwhelming, call in re-enforcements (senior/partner) to come and help.

Competing interests None.

Provenance and peer review Not commissioned; internally peer reviewed.

Contributions JG produced the original idea. All authors contributed to the manuscript.

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