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Proposal for the development of community end of Life Care: A guest post by Julian Abel

12 Feb, 13 | by Assistant Editor

 

Background

Over the last 45 years the hospice movement has set the standard for caring for people who are approaching the end of life.  The levels of services have been developing steadily and the quality of care has been of the highest standard.  An unintentional consequence of the development of end of life services has been that the care has become professionalised.  Families naturally look for professional care as their loved one becomes increasingly unwell.  In addition, although healthcare professionals look to see what care the family can deliver, the main focus of supporting people at home is the addition of a variety of professional care.  Culturally, we have lost something of the traditional role of the community caring for people who are dying.

Proposal

There are two components to this proposal.  The first part relates to involving the network of family and friends supporting the dying person and carer at home.  The second part aims to build compassionate communities who can help to support end of Life Care in their own community.

 

  1. Developing family and friends networks

 

Caring for the terminally ill relies heavily on the support of family and friends.  Often there is a very natural reluctance to ask for help from even close family members.  Even if people offer to help, it is not always clear whether help can be given.  Furthermore close carers may feel a sense of value in maintaining their role without asking others to help.

There are a wide variety of tasks that need to be completed in order to keep someone at home.  These include cooking, cleaning, shopping, washing, dressing, visits to clinics, feeding, medication, collecting prescriptions, and toileting.  Some of these tasks may be small in themselves part in combination add up to a large burden for one person.

We propose that developing a network has two phases.

Firstly, for each patient a map is drawn of close family members and friends.  If possible a person who would be prepared to be the main coordinator is identified on this map.

The second phase is that a chart of the week is drawn up with all the tasks listed down one side.  The coordinator then decides with the main carer and the patient of the acceptability of asking people for help, in a regular and organised fashion.  An explanation that can work well in this circumstance is that caring for somebody with a terminal illness is more of a marathon rather than a sprint.  Keeping the carer has supported as possible is a key component to maintaining the patient at home. Even small amount of input can help significantly.  For example the lift to the shops once a week may be very helpful.  Somebody sitting with the patient whilst the shopping is done can help to give the carer a break.  Sharing the tasks out in an agreed way can help to spread the load of care.  The coordinator maps family and friends on to the chart.

The ideal time to start thinking about these kind of arrangements is when the discussion of advance care planning is started.  At the hospice, advance care planning discussions are usually started by the specialist palliative care community nurse. Planning for care fits easily into thoughts about the future.  The advantage of starting at this point is that care can be increased as the patient becomes less well.

A common experience for many people once the patient has died here is that everyone disappears after the funeral, leaving the care and feeling lonely and unsupported.  However, in this arrangement regular contact can be maintained and gradually withdrawn as the sense of loss and loneliness lessens.  The Healthcare professionals involved in which support the coordinator in drawing up a plan and look to see where there are gaps.  These gaps could then be filled by existing professional Care Services.

  1. The second phase of the project is the development of compassion in communities.  Each time a family network looks after their terminally ill loved-one, they develop skills and expertise on how to do this.  These skills are a resource for communities.  The closest Health Care professional to the patient could ask the developed network if individuals would like to volunteer to help other people in their locality who may be in a similar situation either now or in the future.  For those people who are prepared to do this the details could be kept as a resource and they could be offered more formal training as a volunteer.  For people who have a small network, it is much easier to ask whether they would accept help from somebody who lives in the locality who has been through a similar experience.  They may well be a neighbour who already knows the family concerned.

Over a period of time, communities could build up a large network of you who are prepared to support their neighbours in the end of Life Care.  In this way, end of Life Care is handed back to the community in which it belongs, supported and aided by Health Care professionals.

 

Project proposal

We propose that Weston Hospicecare run a project on developing compassionate communities.  We think that the community specialist palliative care nurse is the ideal person to start the process of identifying the key coordinator and providing supportive documentation.  This would follows naturally from starting advance care planning discussions.  We know from our records that these take place on average three months before the patient dies.  If there is no obvious person to do the coordinating, the palliative care nurse could fulfil this role.

We think that there will be, particularly initially, a significant time input which will have an impact on the palliative care nurses job.  For this reason we would like to employ another specialist palliative care nurse who can act as backfill.

We think that the volunteer carer programme would be ideal in developing volunteers for particular neighbourhoods.  We intend to start the project apply targeting the small number of GP practices so that we can build up a neighbourhood resource.  When a new patient within that locality needs support, the hospice could then use the resources held by the volunteer carer programme.

 

Julian Abel

“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

Des Spence asks, are we in denial?

30 Jun, 11 | by BMJ

Des Spence, in his BMJ ‘From the Frontline’ piece, asks the question, “Assisted dying: are doctors in denial?” It turns out that, rather than being for or against legalisation of physician assisted suicide, Des suggests a third, pragmatic position. He suggests that doctors routinely withhold treatment and shorten patients’ lives with the use of large doses of morphine. This he equates to assisted dying. He proposes that we should be honest and accept the principle of assisted dying and engage in the debate about what assisted dying is.

I have no doubt that giving toxic doses of morphine to shorten the lives of dying patients was the practice of many doctors in the past, but I am also quite sure that it is not common practice now. If anything, the pendulum has swung back to a position where analgesic regimes are not only safe, but rather cautious. Certainly we know that many are ineffective. Those of us working in palliative care services know how easy it is to spot the early signs of opioid toxicity and avoid it. Withdrawing and withholding treatment that is futile or irrelevant to dying patients is unproblematic and there is no difficulty in ceasing life prolonging treatment when that is the wish of a competent patient. I only worry about my patients committing suicide if their mental health is in question, but I’m not going to assist any of them.

One of the many interesting aspects of this debate is that there remains a majority of doctors opposed to a change in the law, in spite of the result of opinion polls in the general population. Doctors who deal with a lot of death in their professional lives are particularly opposed to a change in the law. I personally think that we are influenced by some families and carers who express a preference for doctors giving toxic doses of drugs to their dying patients. There is a spectrum from those that just find it impossible to see their relative in such distress to those with more selfish motives. Dying patients are often ashamed of their distress and the upset they bring to others. I know that if the law changed, the culture would swing even further towards devaluing the lives of frail, elderly and sick. I’m not suggesting that incontinence will become a capital offense, but you know what I mean.

Des says that the debate is simply too important to be left to lawyers and politicians. I do think that doctors need to contribute to the debate, but not for the reasons Des proposes. I’m not saying that we doctors have a monopoly on the evidence, but we do see nearly the whole range of human reactions to common place adversity and we do have some messages that society may find upsetting.

Bill Noble, Editor-in-Chief, BMJ Supportive & Palliative Care

Integrating quantitative and qualitative methods – and getting it published

14 Jun, 11 | by BMJ

Bill Noble, BMJ Supportive & Palliative Care, Editor-in-Chief

Describing a study as ‘mixed method’ never felt very respectable or clever. For years we understood that finding the answer to questions about the value of parts of the health service required different kinds of data. The difficulty was knowing how best to put our findings together. Last week the MoreCare Workshop, led by Irene Higginson and Chris Todd, brought together researchers interested in writing guidelines for effectively designing, analysing and reporting mixed method health service research.

The belief of some researchers that only their methodology had a special relationship with the truth posed another difficulty. Depending on their expertise, they were very antagonistic to either ‘reductionist’ or ‘anecdotal’ ways of thinking.  These people might have been the reason why it was always difficult to publish or get grants for mixed methods. Most members of multidisciplinary research teams have some enthusiasm for the other camp’s trade; and so it was with this meeting.

Alicia O’Cathain was the first to confess the sin that turned out to be everyone’s guilty secret –  we had all reported mixed method studies in separate papers, hermetically sealed by methodology in different journals, with hardly a nod to what we knew about the other aspects of the study. We talked about ways of drawing overarching conclusions from the whole study and making a special effort to get that bit published. There’s a problem with word count when it comes to writing up these studies and as the BMJ‘s Domhnall MacAuley explained, what matters most to editors is new insights. A linked series of papers is one way that reporting these studies could go. Certainly this journal would be interested in mixed methods papers.

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