Guest writers Anna MacPherson and Louise Forman of St Catherine’s Hospice, Preston, discuss the experience of working within a community palliative care team in light of recent changes to the structure of community palliative care.

Community based palliative care services are growing in importance. As surveys repeatedly tell us most people want to die at home[i], and policy shifts towards enabling that, services based in patients’ homes become more prominent.

Traditionally, district nursing services have mainly provided palliative care for people in their home environment, with medical input from GPs. These services have and continue to provide generalist palliative care. In support, specialist palliative care services have grown over recent years, offering a variable combination of practical care and advice, often led by community specialist palliative care nurses.

Over the past fifteen years there has been increasing medical specialist palliative care input into the care of community patients. As with most aspects of palliative care, this has varied, with practices developing locally, different teams finding different ways of working, with little evidence as to what the best model is.

This article presents one community palliative care team’s experiences of this development, and how one team integrated medical and nursing palliative care. This is not a statement of best practice, but aims to share how one team has developed over a relatively long time of having a dedicated community palliative care consultant in post.

Team Structure

The community palliative care team based at St Catherine’s Hospice, Preston covers a mixture of urban and semi-rural areas of Preston, Chorley and South Ribbleand a population of roughly 370,000.[ii] There has been a community palliative care team in this area for many years, comprised of specialist nurses, managed by a nurse manager from 2003, and under the umbrella of the hospice, with GP and hospice physician support. In 2002 a full-time Consultant in Palliative Medicine was appointed to work solely with this team.

There are now 7 full-time equivalent nurse specialists, each responsible for a group of GP practices. Patients referred from any source are the responsibility of the clinical nurse specialist attached to the patient’s GP practice.

Integrated medical and nursing clinical working

There are several ways in which patient management is integrated to facilitate input from both medical and nursing staff.

A major component of joint working is via twice weekly multi-disciplinary team meetings in which all newly referred and complex patients are discussed, allowing the full team to be aware and have some input into the care of these patients. Monthly, a larger MDT meeting is attended in addition by an occupational therapist, physiotherapist and social worker. This format will need to be adjusted to fit with the NICE quality standards[iii] and peer review measures,[iv] for example involving a second consultant, but this adjustment is relatively minor.

On a regular basis the clinical nurse specialists have “clinical supervision” sessions, consisting of a day of joint visits by the nurse and consultant, with the nurse leading, followed by discussion and feedback. This enables additional input for complex patients, as well as an opportunity to raise any concerns or queries. Twice weekly consultant-led out-patient clinics are attended by the consultant in addition to a nominated clinical nurse specialist, allowing joint review and education.

Integration with other services

Gold-Standard Framework[v] type meetings are seen as key opportunities to engage with local primary care teams, and are attended where possible by the designated clinical nurse specialist. This enables an awareness and discussion of a wider range of patients as well as a chance to build working relationships.

Initial assessments follow a structure, including a period of information gathering and liaison prior to seeing any newly referred patient. Referrals are accepted from various sources, and consulting the patient’s primary care team before the first assessment makes this process more efficient and better informed. This liaison continues throughout; the clinical nurse specialists are not nurse prescribers, which has the benefit of encouraging discussion and liaison about management plans with the patient’s primary care team.

In addition, there has been work with local prisons to build relationships and create structures to enable the management of palliative patients within prison environments.

The community-based, hospice and hospital palliative care teams meet weekly using video-conferencing to discuss jointly managed patients. This involves three consultants, so may provide an opportunity to fulfil the peer review measure on MDT meetings. Again, as well as liaison, this is a chance to improve working relationships.

Education and audit

There is a structured education programme involving monthly sessions covering topics chosen by the team. These are in addition to mandatory training, and provide a chance for tutorial-type discussion of complex cases or subjects. Clinical supervision sessions and joint clinics enable informal case-based discussion and teaching.

The community team participates in several education delivery projects. This includes structured education courses, such as programmes providing education to nursing home staff, district nurses and social workers, as well as clinical teaching to various people who shadow the nurse specialists, including medical students and student nurses. This has been a source for additional funding for the hospice.

The community team have held an annual conference for the past fifteen years, involving outside speakers from different backgrounds about mostly clinical topics. This has attracted attendees from local primary care teams, hospitals, other local hospices as well as staff from settings such as nearby prisons. Again, this has been a source of funding.

The team take part in hospice-wide audits and regional palliative medicine audits as well as audits of topics identified by the team.

Management structure

A nurse manager is the direct line manager of the clinical nurse specialists. She holds monthly one-to-one meetings with each nurse specialist to ensure they have adequate support and opportunity to highlight any concerns.

The team as a whole has a monthly business meeting, in which non-clinical projects are discussed as well as any proposed changes to ways of working. Non-clinical projects were previously allocated to certain allocated nurse specialists (e.g. audit leads, education leads), but more recently have been taken on by whichever nurse has capacity and interest in that project.

Recent developments

Over the past two years the hospice has introduced and developed a twenty-four hour advice line, available for professionals, patients and carers. This is provided by the hospice inpatient unit, although the community team are regularly involved in follow up of issues raised. Local palliative care teams share electronic records, so patients can access 24-hour specialist palliative care advice from staff with full background information about them.

During the past six months the community team has started seven-day working. A clinical nurse specialist is available 9-5, seven days each week, and during the weekends answers the advice line as well as being available for face-to-face consultations. This change in working practice has led to more “days-in-lieu” during the week, and so increased strain due to less continuity of care, but has also led to clear benefits in service delivery at weekends. This does now comply with NICE quality standards (ref.2, quality statement 10).

The need to be able to measure results is becoming increasingly important, and audits now focus more on measureable outcomes. The proportion of deaths in each location, whether the LCP was used and whether the preferred place of death was met is recorded, and annual statistics for each nurse specialist looked at by the team. Overall the results for the team compare favourably with other local and national statistics (table 1).

Table 1:

Deaths of patients known to community palliative care team Aug-Oct 2011

Future challenges

NICE quality standards as well as peer-review guidance have recently been published, with specific recommendations for community palliative care teams. Local palliative care services will need to consider how best to meet these measures, which within the above model will require adjustments to existing practice rather than major changes.

These service developments, and the expectation of increasing deaths and care at home, are on a background of increasing financial pressures. The models of care delivery may need to adjust to enable input to greater numbers of patients from a smaller service. This will provide challenges over coming years.

Given the new financial structure, budget constraints and quality standards, it is becoming increasingly important to provide proof of effectiveness of care. Time and effort will need to be invested into trying to accurately measure effects, along with obtaining service user opinions, to be able to bid for even the same amount of funding.

The delivery of palliative care in the community is highly dependent on teamwork with professionals in primary care and allied health professionals, as well as the provision of social care. These areas are all also subject to rising pressures from increasing expectations and demand, along with increasing financial pressure. This will undoubtedly impact on how much effective palliative care can be provided in the community, and models will need to continually develop to provide high-quality palliative care at home with measureable benefits.

A research letter published in the journal Archives of Internal Medicine has reported that patients with end stage renal disease tend to receive very aggressive treatment during their last month of life.

The researchers from the University of Washington analysed data on almost 100,000 Medicare patients who were treated with dialysis, and found that during the last month of life 76% of patients were hospitalized (compared to 61% of cancer patients). The data also showed that the average hospital stay for those with end stage renal disease was double that of cancer patients (10 days compared to just 5 in the cancer group).

Not only were dialysis patients more likely to be hospitalized, they were also three times more likely to receive intrusive procedures (including the placement of feeding tubes and mechanical ventilation).

Interestingly, the authors found that amongst the study population, those who lived in areas with a high end-of-life care spending capacity, were more likely to receive aggressive treatment. This suggests that budgetary factors, rather than patient preferences, may well be driving the end of life care decisions of healthcare workers.

These findings offer a useful insight into the experiences of end-stage renal disease patients, an area in which little research has been published.

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

A study conducted by researchers at Dartmouth University has found that many late-stage cancer patients in the US are receiving unsatisfactory care, with healthcare facilities not fulfilling quality care guidelines.

The team concluded that whilst cancer care has improved over recent years, over a quarter of outpatient oncology practices studied did not adhere to end-of-life quality care guidelines, and a shocking 44% of practices didn’t meet standards for symptom and toxicity management.

Surprisingly, the study also found no significant difference in the quality of care between different types of hospital, with National Cancer Institute designated hospitals providing the same low quality of palliative care as smaller community hospitals. The only difference between the two care settings was that community hospitals were more likely to deliver chemotherapy within the last two weeks of their life – an uncomfortable and unnecessary treatment.

In general, the study indicated that hospitals tended to continue to aggressively treat cancer during the last weeks of life, at a time when palliative (rather than curative) treatments would be more suitable and more humane.

A new study by researchers at Leeds University has found that the number of children in England who have life-limiting conditions (LLCs) is not only much higher than previously thought but also increasing.

Historically, the number of children requiring or receiving palliative care in England has been under-estimated due to the fact that there is no national database for this information.
The authors sought to address this knowledge gap by analysing hospital admission records from 2000-2010 and coding the medical conditions treated. The prevalence of life-limiting conditions amongst under-19s in 2010 was 32 in 10,000 – up from 25 per 10,000 a decade before.

There were also notable differences between ethnic groups, with prevalences in the South Asian (48 per 10,000) and black (42 per 10,000) populations significantly higher than that of the white population (27 per 10,000).

The fact that much of the increase was within the 16-19 age group may indicate that increased survival to late teens – rather than increasing incidence – of LLCs may be the main cause of the increase.

The study also highlights the pressing need to strengthen capacity for paediatric palliative care in England.

Professionals who care for people at the end of life do much more than prescribe drugs, a new study has shown. The qualitative analysis published last month in the journal PLoS Medicine revealed that the day-to-day activities of palliative caregivers throughout Europe are highly multifaceted and complex.

The study used qualitative research methods to identify types of Non-Pharmacological Caregiving Activities (NPCAs) undertaken at 16 different palliative care facilities in nine countries. The responses clearly indicated that the respondents undertook a huge variety of activities which went beyond pharmacological interventions.

The most common NCPA was carrying out or abstaining from bodily care or contact, with many respondents reporting holding hands to provide emotional support as well as maintaining the patient’s oral hygiene.

Somewhat surprisingly, another frequently reported activity was “creating an aesthetical, safe and pleasing environment”, which included applying perfume, making sure there is pleasant lighting, repositioning pictures so that they are visible to the patient and playing the patient’s favourite music. Respondents also indicated that they often provided support not just for the patient but for their loved ones, offering professional advice as well as practical assistance (such as arranging for medical equipment to be removed from the house so that they don’t have to see it after the patient has died).

Whilst the varied nature of palliative care may be obvious to those who work within the field, it is not always apparent to outsiders, and this paper paves the way for future research into the frequency and efficacy of NCPAs.

Californians are not having important discussions about end-of-life preferences with doctors and loved-ones, even though they would like to.

A poll conducted by the California Healthcare Foundation (CHFC) shows that a large majority of respondents would either ‘definitely’ (47%) or ‘probably’ (32%) like to speak to a doctor about their wishes for medical treatment at the end of their life, but a staggering 92% had never had this conversation.

The survey, entitled ‘Final Chapter: Californians’ Attitudes and Experiences with Death and Dying’, saw a representative sample of 1669 people asked about their opinions on end-of-life care, with some interesting findings.

The three most important factors relating to end of life care, according to the majority of respondents, were making sure that family were not financially burdened, being comfortable and without pain and being at peace spiritually.

Another question assessed how familiar respondents were with end-of-life terms. The results are shown in the figure below (source: California Healthcare Foundation), with only 17% of people saying that they had heard of palliative care and just 13% familiar with POLST (physician orders for life-saving treatment).

Source: Californians’ Attitudes Toward End-of-Life Issues, Lake Research Partners, 2011. Statewide survey of 1,669 adult Californians, including 393 respondents who have lost a loved one in the past 12 months

Furthermore, there was a large discrepancy between respondents’ desired place of death and the actual place of death of people who died in the state in 2009 (a frequently recurring theme in end-of-life care surveys throughout the world).  Whilst 70% of people surveyed said that they’d prefer to die at home, only 32% of deaths in California occurred at home in 2009.

Read the full report here.

The American Society of Clinical Oncology (ASCO) have published a provisional clinical opinion (PCO) which suggests that palliative care should play a larger role in standard cancer care, and that cancer patients should be offered palliative care earlier in their treatment.

The PCO is based on evidence from seven recently published randomised controlled trials which suggest that for some forms of cancer, patients benefit from being offered both palliative and standard oncologic care at initial diagnosis. Whilst this approach has not been definitively linked to better survival rates, the studies did show that it generally leads to “better patient and caregiver outcomes” and higher quality of life.

The guidelines highlighted the results of a recent trial by Temel et al, which indicated that patients recently diagnosed with metastatic non-small-cell lung cancer who were given palliative care concurrently with standard treatment had fewer depressive symptoms and a longer median survival time from first diagnosis.

ASCO noted that whilst there is mounting evidence that this kind of combined care is beneficial, there are currently barriers to its implementation, including a dearth of health policy and reimbursement mechanisms. They also state that more palliative care doctors will be required to cope with the increasing demand.

Read the full report here.

A new film by a group of award-winning Australian filmmakers aims to raise awareness of the pain suffered by millions of people each year who die without access to palliative care. LIFE Before Death, which is being released to coincide with World Cancer Day, includes footage from 11 countries around the world and highlights the lack of effective pain treatment and the unnecessary suffering that this causes.

The film is accompanied by 35 poignant and thought-provoking short films which can be viewed here.

The importance of improving access to effective palliative care around the world becomes even more apparent when considering the impact of population ageing upon the incidence of chronic, painful diseases. Changes in mortality and birth rates during the last century or so mean that the demographic phenomenon of population ageing is now an issue facing nearly every country in the world – regardless of levels of development and income.  The Union for International Cancer Control (UICC) reports that 3.3 million people suffering from cancer or HIV will die in severe pain this year and that 99.9% of those deaths will be in low to middle income countries.

LIFE Before Death is narrated by British actor David Suchet and has already received four international film awards. It is available here.

Professor Irene Higginson, Director of the Cicely Saunders Institute and Associate Editor of Supportive and Palliative Care, spoke today of the recent promising trend of more cancer deaths occurring at home in the UK.

In an interview with Radio 4’s Today programme, Professor Higginson highlighted the findings of a recent report which indicates that the long term trend in institutional dying is showing the first signs of reversal since 1974. She cited a “small but significant shift” in the proportion of cancer deaths which occur at home – up from around 22% to about 27% in recent years. The change is significant because whilst a large proportion of people suffering from long-term illness  in the UK express a wish to die at home, an overwhelming majority continue to die in hospitals and hospices. However, the increase seems to be limited only to cancer deaths, with the number of people dying at home from chronic, non-cancer conditions limited to only one in six.

Prof. Higginson also highlighted the extent of regional variation in the country, with some areas having rates of home death as high as 50% and others as low as 10%. When asked about the cause of this large disparity the Professor of Palliative Care responded that there exists a “complicated web of factors” which decide whether someone is able to die at home, some cultural and some relating to services, but that there were also other influences which are not yet fully understood and should be the topic of future research.

Furthermore, Prof. Higginson underlined the importance of effectively training medical professionals so that they are able to ask people about their end-of-life preferences, as this is an important factors in deciding where people will die.

If you’re living in the UK, the interview is available to listen to here for the next week or so, starting at around 53’30”.