Routine integration of palliative care: what will it take?

Palliative care is an essential component of quality care in advanced illness

Palliative care has substantial benefits for patients with advanced disease, including improved symptom relief, quality of life, and communication around health care goals.1 These benefits extend to the patient’s family,2 improving caregiver quality of life and bereavement outcomes.3 Palliative care is also associated with cost savings with reduced hospitalisations and emergency department presentations, and greater likelihood of death at home.1,4

Despite these proven benefits, there is variability in access to palliative care and many patients are not referred in a timely manner. Although 62% of patients with metastatic lung cancer in Victoria are engaged with palliative care services by the time of death, most are referred in the final hospital admission, during which they die.5 These patterns are reflected nationally and internationally, with a median survival following admission to palliative care programs of 22–54 days,3,6 suggesting late referral.

The timing of referral to palliative care or adoption of a palliative approach appears to be important in achieving benefits.2,4,7 Late referral leaves little time to establish confidence in community-based care, or to undertake complex communication tasks, such as exploring values and establishing goals for care. Barriers to timely engagement with palliative care include limitations in workforce and service models, availability of services, failure to recognise poor prognosis or patient needs, and fear of destroying hope or upsetting patients.8,9 Indeed, when referral to palliative care is raised, some patients are distressed but they also report interest in its components, namely access to symptom control, psychological and family support, and assistance with decision making.10 Bereaved carers report a wish for earlier engagement with palliative care in their relative’s illness.11

So how may we improve routine integration of palliative care in advanced illness? A whole-of-system approach has been advocated, involving quality-improvement strategies that identify and respond to specific gaps in care, coupled with measures of achievement and accountability.12 Yet, even in systems without barriers to palliative care, there remain two clinical tasks that appear critical to its successful integration: recognition of the possibility (and need) for palliative care, and sensitive communication.

A number of prompts have been proposed to ensure the task of recognition occurs. These include disease specific prognostic tools, measures of need both symptomatic and psychosocial, and clinical prompts such as “would I be surprised if this patient died in the next 6 months?”. An alternative approach based on service use, such as increasing frequency of admissions, or the development of a nominated disease complication such as metastatic disease, may offer an administrative prompt that occurs routinely and requires a response, rather than initiation, by the physician.

Once recognised, there remains the task of communicating with the patient and family around issues of worsening disease, disability and death. Yet, our society determinedly avoids discourse around dying, focusing instead on “staying positive” and “fighting hard”. The media reinforces this language and focus, offering few stories of those whose illness progresses. This silence is also present in the clinic, and so instead we frequently find it easier to offer a further round of treatment rather than discuss the implications of failure of the last. By failing to engage patients and their families in such discussion until death is imminent, we limit opportunities of patients to realise choices in the final phase of life.

Given these significant barriers, how do we promote palliative care to patients and their families? Perhaps patients themselves offer the solution. When asked, patients are clear about what is important at the end of life, and much of this revolves around successful communication and subsequent planning.13 They want a holistic approach to their care that embraces their hopes for living even as they die. They want to be free of pain and other symptoms, so that they may realise goals in the personal realm. Palliative care represents a philosophy of care that facilitates these goals and should be explained to patients in these terms, as a set of practices oriented towards achieving their nominated wishes.

Successful integration of palliative care in the future will therefore require not just access to quality services, but also recognition of the final phase of life and a willingness by physicians to have this difficult conversation with patients. This conversation should include a careful exploration of the patient’s understanding of the disease, a discussion of possible outcomes, establishing the goals of care, and then, as appropriate, an explanation of tasks of palliative care and how these might be relevant to these goals. Without engagement with this communication, any future possibility for integrated quality care based on patients’ preferences for the end of life will likely be lost.

Palliative care a growth industry

The ageing population and the increasing prevalence of chronic illness has driven a sharp rise in demand for palliative care in hospitals.

There has been a 52 per cent jump in palliative care-related hospitalisations in the past decade, according to the Australian Institute of Health and Welfare, the majority involving patients with cancer.

The Institute reported that almost 62,000 people were admitted to hospital for palliative care in 2012-13, up from 40,435 in 2003-04, and the overwhelming proportion were, not unexpectedly, were elderly or in late middle age.

Institute spokesman Geoff Neideck said a shift in the pattern of disease afflicting people towards the end of their lives – the growing prevalence of chronic illnesses – contributed to the increased use of palliative care, as did growth in the number of people living into old age.

“As we would expect, palliative care services are accessed more frequently by older people – people aged 75 years and [older] accounted for just over half of all palliative care hospitalisations,” Mr Neideck said.

The report showed that 56 per cent of patients hospitalised for palliative care had cancer, and palliative care was particularly prominent in a treatment of those with certain types of the disease.

For instance, he said, a third of all hospitalisations related to pancreatic cancer were related to palliative care.

The Institute’s report, Palliative care services in Australia 2015, also detailed the sort of medications patients in palliative care were prescribed.

It found more than 51,200 prescriptions were provided to 25,900 patients in 2013-14, 87 per cent of which were subsidised by the Federal Government.

Laxatives were the most commonly-prescribed drug, followed by analgesics and anti-epileptics.

Adrian Rollins

[Comment] Offline: Fibbing for God

On Sept 11, the UK’s House of Commons votes on a Private Member’s Bill (tabled by Rob Marris MP) that would legalise assisted dying. According to Healthcare Professionals for Assisted Dying, a group that lobbies for a change to the law, “dying people should be able to control the manner and timing of their death if their suffering has become unbearable”. The forces against assisted dying, or assisted suicide as some critics prefer to call it, are formidable. The most high-profile campaigner against assisted dying is Ilora Finlay, professor of palliative care at Cardiff University, co-chair of Living and Dying Well, chair-elect of the National Council for Palliative Care, past-President of the British Medical Association (BMA), and a member of the BMA’s Medical Ethics Committee.

[Comment] Closing the divide: the Harvard Global Equity Initiative– Commission on global access to pain control and palliative care

Access to palliative care—the prevention and relief of physical, emotional, social, or spiritual suffering associated with any chronic or life-threatening illness, beginning from the time of diagnosis—is at the core of the right to health and is fundamental to health care. Alleviation of all forms of pain and suffering, both acute and chronic, is an ethical duty of societies and health professionals.1,2 Yet most of the world’s population has little or no access to pain control and palliative care, forcing patients and families to endure a tremendous burden of avoidable suffering.

[Correspondence] Surgical palliative care in resource-limited settings

To relieve suffering in people is a universal aim of all medical and surgical specialties, yet a chasm exists between palliative and surgical disciplines. Every year about 40 million people need palliative services worldwide, but only 10% receive them.1 The need for palliative care is disproportionate to the density of health-care providers: 80% of those in need are in low-income and middle-income countries (LMICs) where the health-care workforce is limited.1,2 In such areas, the surgical workforce might feel obligated to focus on patients with curable conditions rather than those with terminal conditions because it might seem too late to help the latter.

Public and preventive health programs under cloud

The future of important public and preventive health and support programs for Alzheimer’s, palliative care, alcohol and addiction, rural and Indigenous health are under a cloud after the Federal Government announced almost $1 billion of cuts from health programs.

In a decision that has thrown doubts over the funding of organisations including Alzheimer’s Australia, Palliative Care Australia and the Foundation for Alcohol Research and Education, the Government said it would achieve savings of $962.8 million over the next five years by “rationalising and streamlining funding across a range of Health programs”, including so-called Health Department Flexible Funds, dental workforce programs, preventive health research, GP Super Clinics and several other sources.

AMA President Associate Professor Brian Owler the lack of detail around the savings was concerning.

“There is a lot of uncertainty in Canberra and around the country at the moment as to whether those important programs, those important organisations, such as Palliative Care Australia, Alzheimer’s Australia, the Foundation for Alcohol Research and Education, and many other non-government organisations, are going to be continued to be funded,” A/Professor Owler said. “Rather than announcing that these cuts of almost $1 billion are going to be made to those flexible funds, and leaving it up in the air for these organisations, we need to see certainty around where those cuts are going to be made, how they are going to be applied, so that these organisations can not only plan for their future but also continue their very important work.”

In addition, the Government has tagged the Health Department for an extra $113.1 million of savings in the next five years as part of its Smaller Government initiative.

It said this would be achieved by measures including consolidating the Therapeutic Goods Administration’s corporate and legal services into the Health Department, axing the National Lead Clinicians Group, replacing IT contractors by recruiting full-time staff and “ceasing activities that mirror the work of specialist agencies”, such as the Independent Hospital Pricing Authority, the National Blood Authority, and the Australian Institute of Health and Welfare.

Adrian Rollins

Are potential organ donors missed on general wards? A 6-month audit of hospital deaths

In the decade to 2008, the deceased donor and organ transplant rates in Australia failed to increase in line with population growth, and there was little change in the number of patients needing organ transplantation.1 In response to this, the Australian Government set out the National Reform Programme, comprising nine measures to establish the world’s best practice in organ and tissue donation.2

An important part of the national approach is the DonateLife Audit, which aims to report on all actual and potential organ donation activity: donor identification, request and consent rates; reasons why donation does not proceed; and missed donation opportunities. Data are collected on all deaths of patients aged between 28 days and 80 years in the emergency department (ED) and intensive care unit (ICU) (or on the wards if discharged from the ED or ICU in the previous 24 hours) and deaths of any other patient when organ donation is considered.

Royal Prince Alfred Hospital has been contributing to the DonateLife Audit since its inception, and we believe that we miss very few potential organ donors from EDs and ICUs. The DonateLife Audit does not, however, consider whether potential organ donors on the general wards who have not been recently discharged from the ICU or ED have been missed.

The success of organ donation programs is defined by the rate of deceased organ donors per million population (dpmp). Australia’s rate increased from 9–12 dpmp in 2009 to over 16 dpmp in 2013.3 Despite this, there is a body of opinion in Australia that progress has been too slow and not reflective of the large increase in funding that the reform committed.4 Furthermore, the change has not been uniform, with New South Wales achieving only 14.2 dpmp in 2013.

The increased donation rate falls well short of the rates reported for the highest performing countries, such as Spain (over 35 dpmp).5 It has been suggested that not all potential donors are being identified in Australian hospitals and that changes in hospital practice are needed to further increase donation rates.4,6

We conducted an audit of hospital deaths to examine whether potential organ donors outside the DonateLife Audit areas of EDs and ICUs are being missed. The potential for tissue-only donation was not investigated.

Methods

The audit was conducted at Royal Prince Alfred Hospital, a metropolitan 700-bed tertiary referral and teaching hospital in NSW. Specialties include neurology and neurosurgery, patients include rural and out-of-catchment referrals and patients admitted through the ED, and there is a 50-bed intensive care floor. Hospital deaths between 1 July and 31 December 2012 were reviewed by two donation specialists medical (DSMs) (both intensive care specialists) and a donation specialist nurse (DSN).

The following groups of patients were excluded from further review as they are generally deemed unsuitable for organ donation: those who died when they were aged ≥ 80 years; those admitted to hospital under oncology, palliative care for cancer or haematology services (ie, those with an oncological diagnosis); and those who could not be resuscitated from cardiac arrest in the ED. Neonates who died when they were aged ≤ 28 days were excluded, in keeping with the DonateLife Audit.

Patients referred to the DonateLife team were categorised according to standard potential organ donor categories by the DSN (Box 1).7 The remaining patients were then assessed independently for suitability and likelihood of progression to organ donation by the two DSMs, using the hospital’s electronic medical records. Where there was disagreement, the DSN reviewed the case record and had the casting vote.

Patients were deemed not medically suitable (NMS) if they were aged > 65 years and had a non-neurological diagnosis, as such patients would have been highly unlikely to become brain dead and were over the age accepted in NSW in 2012 for donation after circulatory death (DCD). Patients who had active cancer, had septicaemia or were dying a circulatory death despite maximal medical therapy were also deemed NMS, as these conditions contraindicate organ donation. Patients who died with multiple organ failure (defined as presence of two or more organ failures) were analysed individually to establish whether non-failed organs might have been suitable for donation. Finally, patients were deemed NMS if a treatment limitation stating that they were not to receive mechanical ventilation had been made.

The remaining patient deaths, where we could not establish a clear reason to exclude the potential for organ donation, were reviewed in detail and assigned to potential organ donor categories by a panel of five organ donation specialists. The panel consisted of three DSMs, the DSN from Royal Prince Alfred Hospital and, to ensure that the study embraced the same medical standards of donor evaluation as the highest performing country, a medical donation specialist from Spain.

The Sydney Local Health District Ethics Review Committee confirmed that ethics approval was not required for publication of the audit data.

Results

During the study period, there were 427 patient deaths. Their distributions by age and location are shown in Box 2. Most deaths of patients aged ≤ 65 years who did not have cancer occurred in the ICU (39/48). Of patients aged < 80 years who died on general wards, only 17 had neurological diagnoses.

Excluded deaths

Exclusions and disposition categories are shown in Box 3. On initial review, 262 patients were excluded; more than half of them were excluded on age grounds and 78 because of a diagnosis of active cancer.

Twenty-eight patients were excluded on the basis of multiple organ failure, of whom 24 died in the ICU and were thus already assessed by the DonateLife Audit tool (which identified none as a potential organ donor). The four multiple organ failure patients who died on general wards included three with end-stage liver failure and other organ failures, and one with an inoperable intracerebral haemorrhage and multiple organ dysfunction. In no case of multiple organ failure was it considered that donation of a non-failed organ might have been possible.

Nine patients had a treatment limitation in place precluding mechanical ventilation. Three of them had neurological diagnoses but were aged > 70 years and thus unsuitable for consideration for DCD; these patients had low or no potential to progress to brain death (Category D, Box 1) and they all died on general wards late after hospital admission. Three patients died on general wards with end-stage respiratory disease for which mechanical ventilation was deemed inappropriate. One patient had a terminal illness with an advance care directive precluding mechanical ventilation, and one had end-stage liver failure and had been deemed too unwell to undergo liver transplantation. The other patient died in the ICU while receiving palliative care for a hypoxic brain injury many days after removal of mechanical ventilation.

Organ donation referrals

Twelve patients had been referred to the DonateLife team to be considered for organ donation, of whom three subsequently became organ donors (< 1% of patients who died in hospital). Of the other nine, DCD was planned for two patients, but this failed in both cases (death occurred greater than 90 minutes after withdrawal of mechanical ventilation); one was deemed NMS after the referral was made (and therefore consent was not sought); and six patients did not proceed to donation because consent was refused (in one case this was patient refusal on the NSW Roads and Traffic Authority [RTA] database).

Deaths reviewed by expert panel

Ten patients were reviewed in detail by the panel of organ donation specialists. Eight of them died on general wards. They were all aged > 65 years, above the 2012 cut-off age for consideration of DCD in NSW, and would therefore have had to progress to brain death to be considered realistic potential organ donors. All eight had neurological diagnoses; five were deemed Category D and three were deemed Category C (Box 1). The three deemed Category C might have become organ donors if they had received or had continued mechanical ventilation solely for the purpose of facilitating organ donation. The other two patients died in the ICU and were both aged < 65 years. One had end-stage pulmonary fibrosis and was considered by the panel to be a potential DCD donor (considered but rejected for lung transplantation, consent for organ donation not sought), and the other had respiratory failure and was deemed to have failed supportive treatment.

Comparison with DonateLife Audit

During the study period, 16 patient deaths were entered into the DonateLife Audit. When compared with our audit, these included all 12 patients referred to the DonateLife team, three from the group that underwent panel review and one from the group of excluded deaths. The audit did not identify any missed potential organ donors who died in the ED or ICU.

Discussion

To our knowledge, this is the first comprehensive audit of all deaths in an Australian hospital to evaluate potential for organ donation, including both donation after brain death (DBD) and DCD. Over 6 months at Royal Prince Alfred Hospital, we identified three patients who died outside the ED or ICU for whom there was a possibility of progression to brain death within 24 hours and the potential to become organ donors. Meanwhile, the DonateLife Audit did not identify any missed potential organ donors who died in the ED or ICU. Furthermore, for the three potential organ donors to have progressed to organ donation, medical interventions that are not in keeping with standard Australian practice would have been required.

The principal potential weakness of our study was its pragmatic nature. This meant that we might have excluded some potential organ donors.

The most common reason for which patients were excluded was age. Some of those we excluded on this basis might represent missed potential organ donors because the age cut-offs for organ donation have been increasing over the years, with those aged over 80 years increasingly considered for DBD and those aged over 65 years for DCD.8 In accordance with the DonateLife Audit, neonates under 28 days old were excluded, but it is possible for neonates to be considered for organ donation.

The second most common reason for exclusion was an oncological diagnosis. We excluded patients on the basis of a listed diagnosis of malignancy without further review. As some patients with low-grade, confined malignancies can be considered for organ donation,8 a small number of patients excluded due to malignancy might have been potential donors.

We excluded three patients due to septicaemia, and we excluded other patients who had septicaemia on the basis of multiple organ failure. However, organ donation can occasionally be considered in patients diagnosed with septicaemia that is deemed treatable in either the donor or the recipient and in patients who have received 24–48 hours of treatment for suspected septicaemia.8

We did not consider patients who died after failed cardiopulmonary resuscitation in the ED as potential organ donors. DCD is classified using the Maastricht classification (Box 4).9 In Australia, only patients in Categories 3 and 4 are regarded by the Australian and New Zealand Intensive Care Society as suitable for DCD.10 This is in contrast to the situation in some other countries where “uncontrolled” DCD (Category 2) is practised. In the Madrid region of Spain, for example, uncontrolled DCD accounted for 41% of deceased organ donors in 2012.11

Our audit confirmed that only a small number of patients who die in hospital are potentially suitable for organ donation. Of the 12 referred to the DonateLife team, only three progressed to organ donation, with refusal of consent (50%) being the principal reason that organ donation did not proceed.

Only three of the 10 additional patients whose cases underwent panel review were assessed as Category C potential organ donors. Two of them would have required initiation of mechanical ventilation in the ED solely for the purposes of organ donation, and one might have undergone a longer period of mechanical ventilation in the ICU to allow for possible progression to brain death. There was only one potential DCD organ donor (who was rejected for lung transplantation) who might have been referred to the DonateLife team.

It is not current Australian practice to perform tracheal intubation and mechanical ventilation solely for the purposes of facilitating organ donation. Patients who require this solely for organ donation therefore represent potential organ donors, but only if there was a change to medical practice. This would require a complex and open debate in the medical and general community.

The finding that most deaths of patients aged ≤ 65 years who did not have cancer occurred in the ICU confirms that it is unlikely that there is a large pool of potential DCD organ donors dying on the general wards. Furthermore, the small number of patients aged < 80 years who died on general wards with a primary neurological diagnosis suggests that there is also not a substantial pool of potential DBD organ donors dying outside the ED and ICU.

Although the deceased organ donor rate is increasing in Australia, it is substantially lower than the highest performing countries (eg, Spain5). For this reason, we believe that more should be done to identify potential organ donors. While the use of uncontrolled DCD organ donors is common in some Spanish hospitals, this makes up only about 4% of total Spanish deceased organ donors.5

Of more importance is the incidence of brain death, which in Spain is more than double that in Australia.12 It has been suggested that the higher rate of brain death, and thus organ donors, might at least partly be explained by a practice of actively seeking potential organ donors outside the ICU and possibly a low tendency in Spanish ICUs to transition away from active treatments and towards palliative care when survival seems unlikely.

We conducted this audit to identify whether there were patients dying in our general wards who might have had the potential to become organ donors if treated differently. We identified only three such patients. It is likely that the major changes in Australian medical practice that would be required to recruit these potential organ donors would result in only a small change in organ donor numbers at best, but at the expense of a potentially less benevolent approach to palliation at the end of life.

A significant and important difference between Australian and Spanish practices highlighted by this audit is the low rate of next-of-kin consent for organ donation in Australia compared with Spain (61% v 84% during the period 2012–2013).3,5 An increase in next-of-kin consent rate (for the patients referred to the DonateLife team for whom consent was sought [ie, 12 minus the one deemed NMS and one with refusal on the RTA database]) from the 50% seen in our audit to 84% would have increased our consented organ donor number from five to eight without the need to seek any additional potential or marginal organ donors across the hospital.

We believe our data show that the DonateLife Audit is a robust tool for monitoring identification of potential organ donors in Australia and that extending its scope beyond the ICU and ED would not achieve a substantial increase in identification of potential donors. It appears that the principal factors affecting the lower organ donation rate in Australia compared with countries such as Spain are the lower rates of brain death and consent. Maximising consent rates is likely to be the single most effective intervention to increase organ donor numbers within existing medical practice in Australia.

1 Potential organ donor categories7

Category A: Confirmed brain death (BD)

Category B: Probable BD (BD was not formally diagnosed but, based on chart review, the patient was likely to have fulfilled the criteria for BD)

Category C: Imminent BD (potential to develop BD within 24 hours of end-of-life decision making if supportive treatment had been continued)

Category D: Low or no potential to progress to BD

Potential donation after circulatory death: Medically suitable for organ donation and thought to be likely to progress to circulatory death within 90 minutes of withdrawal of cardiorespiratory support

2 Deaths by age and location (n = 427)*

Age	Intensive care unit (n = 102)	Ward (n = 283)	Emergency department (n = 33)	Neonatal intensive care unit and delivery suite (n = 9)

≤ 65 years	49 (48.0%)	57 (20.1%)	7 (21.2%)	9 (100.0%)
66–79 years	30 (29.4%)	92 (32.5%)	8 (24.2%)	0
≥ 80 years	23 (22.5%)	134 (47.3%)	18 (54.5%)	0

3 Patient deaths included in the audit and their disposition categories

4 Maastricht classification for donation after circulatory death9

Category 1: Dead on arrival to hospital

Category 2: Failed resuscitation in the emergency department or intensive care unit

Category 3: Withdrawal of treatment in the intensive care unit

Category 4: Cardiac arrest following determination of brain death but before planned organ procurement

Metastatic non-small cell lung cancer: a benchmark for quality end-of-life cancer care?

Lung cancer is one of the most common fatal cancers in the world. In Australia, about 7500 patients die from lung cancer each year,1 and the median survival for those with metastatic non-small cell lung cancer (NSCLC) is 4–5 months.2 Despite improvements in survival, attention to symptoms and quality-of-life concerns form the mainstay of treatment for most patients.

Those with advanced lung cancer have a substantial symptom burden. Most patients experience appetite loss, fatigue, cough, dyspnoea and chest pain.3,4 In 2010, Temel and colleagues demonstrated that early introduction of palliative care integrated with standard oncological care for this population was associated with improved quality of life, reduced depression and less aggressive care at end of life.5 Following this, the American Society of Clinical Oncology released a provisional clinical opinion that patients with metastatic NSCLC “should be offered concurrent palliative care and standard oncologic care at initial diagnosis”, while national societies have endorsed timely palliative care referral.6,7

The aggressiveness of cancer care near the end of life has been proposed as an indicator of quality of care, and centres around the following criteria: overuse of chemotherapy near death; high rates of emergency department (ED) visits; hospital and intensive care unit stays; and underuse of hospice or palliative care services.8

A series of population-based studies of cancer care in the United States and Canada revealed the aggressiveness of care at the end of life had increased.9,10 Patients more likely to receive aggressive end-of-life care were young, male and rural based, experienced greater comorbidity burden, and had lung, breast or haematological malignancies.9,10

Given the recommendation for integrated palliative care services for patients with metastatic NSCLC, we sought to examine the end-of-life care for this patient group. Using routinely collected hospital discharge, ED and death certificate data for a cohort of patients with metastatic NSCLC, we aimed to examine their patterns of care. These included the aggressiveness of care, ED visits, intensive care use, timing of chemotherapy in relation to death, hospitalisation patterns, and place of death. We also aimed to determine patterns of referral to hospital-based supportive and palliative care services.

Methods

Setting

Palliative care services in Victoria, Australia, are organised into three main areas: acute hospital consultancy services; community palliative care services providing care in the patient’s residence; and specialist inpatient palliative care units. Our study sought to examine the use of hospital-based palliative care services (ie, the first and third areas above).

Data sources

Hospital discharge and ED data are compiled by over 300 individual hospitals and maintained by the Victorian Department of Health (VDH).11–13 The two datasets contain demographic and clinical information on each episode of patient care; their quality is maintained using an independent audit program.14,15 Death certificate data are maintained by the Registry of Births, Deaths and Marriages.13

These three datasets undergo step-wise deterministic data linkage at VDH.16 Linkage staff assess data quality by a series of internal logic checks and manual review of randomly selected case groups. Notably, these data report on patients who have had contact with the hospital sector only.

Metastatic NSCLC cases

Metastatic NSCLC cases were extracted based on a combination of three sets of codes: lung cancer, small cell morphology (excluded), and metastatic extension (Appendix). The first data point or entry to the study was defined as hospitalisation when both NSCLC and metastases were coded. We included only NSCLC patients who were diagnosed with metastatic disease and died between 1 July 2003 and 30 June 2010.

Outcomes

Supportive care was defined as consultation by one or more of the following services — social work, physiotherapy, occupational therapy, psychology or speech pathology — using Australian Classification of Health Interventions codes.17 Palliative care was defined as consultation with a hospital-based palliative care service.

Site of death was based on a combination of hospital and death certificate data and classified into three mutually exclusive groups: outside hospital; inpatient hospice or palliative care bed; and acute care hospital bed.

Aggressiveness of care (adopted from Earle and colleagues8 and using available dataset information) was defined by the following parameters in the last 30 days of life: more than one ED presentation; more than one hospital admission; length of stay more than 14 days; intensive care unit admission; and inpatient chemotherapy administration (including same-day admissions) within 14 days of death.

Statistical analysis

The illness course was divided into three distinct time periods based on key admissions: hospitalisation for first metastasis; interval between metastasis and just before final admission (for those who died in hospital) or death (for those who died outside hospital); and death admission for those who died in hospital (Box 1). The care was described at these time intervals using medians and interquartile ranges for continuous factors, and frequencies and proportions for categorical variables. A logistic regression model was fitted for the question: what factors predict the likelihood of death in an acute hospital bed? Stata version 13 (StataCorp) was used for all statistical analyses.

Ethics approval

This study was approved by the Monash University human research ethics committee.

Results

There were 6041 eligible NSCLC cases diagnosed with a first metastasis in the period of interest. Eighty per cent were aged ≥ 60 years and 63% were male (Box 2). At the first hospitalisation for metastatic disease, sites of metastases were: bone, 31%; lymph nodes, 36%; lung, 26%; brain, 19%; and 27% had more than one metastatic site.

Survival

Median survival after hospitalisation with first metastasis (ie, at point of entry into cohort) was 116 days, with 75% of patients (4551) surviving at least 43 days and 25% (1536) over 9 months (range 0–2324 days). This short median survival reflects our sampling frame, which included only those patients who died. Twelve per cent of patients (728) died during the first metastasis admission.

Place of death

Sixteen per cent of patients died outside of hospital, 42% in a palliative care unit, and 42% in an acute hospital bed (Box 2).

Patterns of ED and hospital use from diagnosis to death

Thirty-five per cent of patients (2104) were admitted through the ED at time of hospitalisation when metastatic disease was first coded. The proportion of patients receiving ED care was 58% for those who died during the first metastasis admission, and 42% for those who died in hospital after surviving initial admission (Box 3).

The proportion of patients receiving care in the private system reduced slightly over their cancer care, from 35% at first metastasis, to 28% at time of death.

The duration of the first admission where metastatic disease was diagnosed was a median of 43 days for those who died during this admission, compared with 6 days for those who survived the admission. Overall, patients spent a median of 38 days in hospital from first admission of metastatic disease until death.

A third of patients (1998) underwent a lung procedure (including pleuridesis, biopsy, bronchial stenting) during the admission when metastatic disease was first diagnosed, reducing to 6% during their death admission (Box 3).

Supportive and palliative care from diagnosis to death

Overall, 62% of patients were referred to palliative care (Box 2). In general, receipt of supportive care (96%) and palliative care (78%) were high for the 728 patients dying during the first metastasis admission. Sixty per cent were transferred to a hospice bed during this admission.

Of the remaining 5313 patients who survived the first metastasis admission, 10% were referred to hospital-based palliative care by time of discharge (Box 3). A further 22% were first referred to hospital-based palliative care in the interval between metastasis and death (or death admission for those dying in hospital), and 27% were referred for the first time when they returned to hospital to die.

Aggressiveness of care

In the last 30 days of life, 18% of 5313 patients surviving beyond the first metastasis admission had more than one hospital admission, and 5% had intensive care treatment. However, 61% spent more than 14 days in hospital, and less than 1% had chemotherapy in the last 14 days of life (Box 4). Thirty-three per cent (2010) were not flagged by any indicator of aggressive care.

Factors associated with place of death

For patients who survived the first admission with metastatic disease, 42% died in an acute hospital bed (Box 2). Factors independently associated with increased likelihood of death in an acute bed included treatment in the private system and a rural place of residence (Box 5). Meanwhile, receipt of palliative care at any point, receipt of two or more modalities of supportive care, and English as the primary language were associated with a greater likelihood of death at home or in a palliative care unit. Notably, those surviving at least 270 days after their metastasis admission were less likely to die in an acute bed compared with those surviving less than 90 days. There was no change in the likelihood of dying in an acute bed over the time of the study.

Discussion

Our study provides an overview of care for patients with metastatic NSCLC in Victoria, Australia. It found that 42% of patients who die due to NSCLC can expect to die in an acute hospital and 42% in a hospice setting, having spent a median of 38 days in hospital after the onset of metastatic disease.

Although the patients did not generally receive aggressive care in the form of intensive care unit treatment or chemotherapy in the last 14 days of life, other parameters of aggressive care — notably, death in acute hospital and ED visits — were common. Perhaps the most important finding is the low numbers of patients discharged from hospital following the diagnosis of metastatic disease who were referred to hospital palliative care services during the first admission for metastasis (10%). This is a group of patients with poor prognostic disease, who are not being identified as requiring palliative care services.

We propose that the care of people with metastatic NSCLC is a reasonable benchmark of the quality of end-of-life care or, more broadly, palliative care, for those with eventually fatal oncological disease. This is because metastatic NSCLC is associated with a poor prognosis (less than 4 months in our study) and a high symptom burden;2–4 has high-quality evidence of benefits from palliative care;5 and palliative care has been recommended as part of standard practice.6,18 Such key unambiguous reasons for routinely involving palliative care for patients with metastatic NSCLC may provide the ideal model for assessing the quality of end-of-life care provision.

In this context, our study shows that for metastatic NSCLC patients, where the case for palliative care is strong, gaps remain in service provision. For example, just 18% of patients overall received hospital-based palliative care services at the first sign of metastatic disease, including those who died during that admission; referral was far less frequent among those discharged from hospital. While this proportion increased to 62% overall, about a quarter of these patients first received palliative care services in the readmission that resulted in their death.

Palliative care referrals, when they do occur, appear often to be late in the illness. Poulose and colleagues highlighted the timing of referral to palliative care as important, suggesting that referral at least 30 days before death is associated with a greater chance of dying at home or in hospice,19 the preferred options expressed by most surveyed patients.20–22 Similarly, Earle and colleagues suggested that hospice admission 3 days or less before death is a marker of poor-quality care.8

In our study, referral occurred very late, at the time of death admission, for about a quarter of all patients surviving the initial admission with metastasis. This may not represent the first contact with palliative care services for all patients, as they may previously have been involved with community care, but it is likely to be the first contact for at least a significant number. Late referrals to palliative care diminish opportunities to institute community networks of support. Late referrals also do not allow sufficient time for patients and families to establish confidence in such networks. Our and other studies23,24 show that referral to palliative care services is an independent predictor of the likelihood of death outside the acute hospital and reduced hospitalisations, but it appears that time is required in order for this effect to be realised. In addition, late referral to palliative care necessarily truncates opportunities to attend to psychosocial and symptom needs.

Based on our proposition that metastatic NSCLC should represent a suitable benchmark for palliative care provision to oncology patients, it is worthwhile considering what may be the most pertinent quality indicator(s). In our study, 62% of patients were engaged with hospital-based palliative care services overall. This figure is high, and may be even higher since community-based care was not captured. Nevertheless, only 18% accessed palliative care during the admission when metastatic disease was diagnosed, potentially the most appropriate time to discuss the benefits of palliative care for this patient group. What level of palliative care should be considered the preferred standard of quality end-of-life care for metastatic NSCLC patients, and when should referral occur? Is the current proportion of 18% receiving palliative care at first admission with metastatic disease sufficient, or would 50% or even 90% of patients indicate better-quality care, in light of evidence that referral to palliative care at this time may prolong survival?5 Further, how should quality be judged in other diagnostic cohorts where the associated factors are ambiguous, such as when prognosis is longer?

Our study had several limitations. The analysis relied on routinely collected hospital data, so care events that took place outside hospital were not collected. This means that patients diagnosed with a metastasis as outpatients and never admitted were not part of our analysis. Similarly, community-based palliative care provision was not available in our dataset, and therefore receipt of palliative care is likely to be higher than we have reported. In Western Australia, this has been found to represent up to 24% of cancer patients.25 While local care patterns are likely to be influential, this community-only group may also be significant in Victoria. Oral chemotherapy regimens not requiring intravenous drug administration would not have been captured. Finally, our cohort included patients who were diagnosed and died within the follow-up period, which meant that particularly long survivors were not included. Nevertheless, our approach enabled us to document care during the whole illness period for those included, which was consistent with our focus on care at the end-of-life.

In conclusion, we sought to establish the current patterns of care and use of hospital palliative care for patients with metastatic NSCLC in Victoria. In this group, who we propose as a benchmark of quality end-of-life care, there was limited use of aggressive treatment measures such as intensive care and chemotherapy at end of life, although high numbers of people died in acute hospitals following a substantial length of stay. Most patients were referred to palliative care services, but this tended to happen later in the illness course. Future work is required to determine appropriate targets for quality end-of-life care in this and other cancer patient cohorts, with particular focus on timely palliative care engagement.

1 Schema of time intervals as basis for analysis

2 Demographic and clinical data (n = 6041)

Characteristic	No. of patients

Age
< 40 years	39 (1%)
40–59 years	1167 (19%)
≥ 60 years	4835 (80%)
Male	3815 (63%)
Australian born	3656 (61%)
English as primary language	4328 (72%)
Married	3869 (64%)
Rural residence	2058 (34%)
Histology
Adenocarcinoma	2081 (34%)
Large cell carcinoma	433 (7%)
Non-small cell, not further classified	1655 (27%)
Squamous cell carcinoma	877 (15%)
Bronchoalveolar carcinoma	33 (1%)
No histology	1181 (20%)
Total number of histological types
0	1181 (20%)
1	4557 (75%)
≥ 2	303 (5%)
Metastatic site at time of diagnosis
Bone	1890 (31%)
Brain	1156 (19%)
Lung	1565 (26%)
Lymph nodes	2157 (36%)
Other	378 (6%)
Referral to hospital-based palliative care services	3724 (62%)
Place of death
Acute hospital bed	2547 (42%)
Hospice or palliative care bed	2532 (42%)
Out of hospital	962 (16%)

3 Patterns of hospital use, and supportive and palliative care (n = 6041)*

	Interval 1: first metastasis admission
Variable	Died during admission	Alive after admission	Interval 2: between metastasis and death†	Interval 3: death in hospital‡ after surviving metastasis admission

Total at beginning of each interval§	728	5313	5313	4440
Median days during each interval (range)	43 (30–254)	6 (1–181)	123 (0–2304)	10 (1–271)
Any hospitalisation	728 (100%)	5313 (100%)	4360 (82%)	4440 (100%)
Median bed days per person (range)	43 (30–254)	6 (1–181)	20 (1–515)	7 (1–195)
Any ED visit	422 (58%)	1682 (32%)	2707 (51%)	1860 (42%)
Median ED visits per person (range)	1	1	2 (1–3)	1
Median hours spent in ED per person (range)	8 (0–54)	8 (0–49)	12 (0–145)	7 (0–180)
Intensive care unit admission	72 (10%)	656 (12%)	288 (5%)	215 (5%)
Lung procedures	228 (31%)	1770 (33%)	897 (17%)	257 (6%)
Chemotherapy as inpatient	11 (2%)	221 (4%)	417 (8%)	18 (< 1%)
Radiotherapy as inpatient	78 (11%)	226 (4%)	235 (4%)	127 (3%)
No. of supportive care modalities
0	31 (4%)	2616 (49%)	1039 (20%)	1760 (40%)
1	72 (10%)	975 (18%)	935 (18%)	911 (21%)
≥ 2	625 (86%)	1722 (32%)	2388 (45%)	1724 (39%)
First palliative care	569 (78%)	531 (10%)	1176 (22%)	1448 (32%)¶

* Data are number of patients (%) unless otherwise indicated; percentages within rows do not reflect mutually exclusive groups. † Including death for patients who died outside hospital. ‡ Acute hospital or palliative care unit. § Within interval, this is the denominator for percentages. ¶ If the denominator for the first palliative care in this interval is 5313 (ie, patients who survived the diagnostic metastasis admission), the proportion is 27%.

4 Indicators of aggressiveness of care at the end of life* (n = 5313)

Indicator	No. of patients

More than one acute hospital admission in last 30 days of life	973 (18%)
Length of stay more than 14 days in last 30 days of life	3219 (61%)
Intensive care unit admission in last 30 days of life	251 (5%)
More than one ED presentation in last 30 days of life	68 (1%)
ED presentation in death admission in last 30 days of life	2225 (42%)
Chemotherapy in last 14 days of life	53 (1%)

ED = emergency department. * Includes death admission for patients who died in hospital.

5 Factors associated with death in the acute hospital

Death in acute hospital bed

Odds ratio (95% CI)

First receipt of palliative care

No palliative care

1.00

Within 30 days, during metastasis admission

0.27 (0.22–0.33)

< 0.001

≥ 30 days after metastasis and before death admission

0.25 (0.21–0.30)

< 0.001

Death admission

0.22 (0.19–0.25)

< 0.001

Sex

Male

1.00

Female

0.97 (0.85–1.10)

Age, years

< 40

1.00

40–59

0.66 (0.33–1.31)

≥ 60

0.59 (0.30–1.16)

Private hospital

1.25 (1.10–1.42)

< 0.001

English speaking

0.82 (0.72–0.94)

0.01

Married

1.06 (0.97–1.16)

Rural

1.62 (1.42–1.84)

< 0.001

Metastases

Bone

0.96 (0.83–1.11)

Brain

0.88 (0.74–1.05)

Liver

0.97 (0.82–1.15)

Lung

1.16 (0.99–1.35)

Lymph nodes

1.21 (1.04–1.39)

0.011

Other

0.95 (0.72–1.24)

Total number of supportive care modalities

1.00

0.88 (0.73–1.07)

0.65 (0.56–0.75)

< 0.001

Year of metastasis

2003

1.00

2004

1.09 (0.83–1.42)

2005

1.15 (0.88–1.51)

2006

1.08 (0.83–1.42)

2007

1.27 (0.97–1.67)

2008

1.07 (0.82–1.41)

2009

1.15 (0.86–1.53)

2010

1.20 (0.75–1.91)

Days lived

< 90

1.00

90–179

0.89 (0.75–1.05)

180–269

0.88 (0.73–1.07)

270–364

0.74 (0.58–0.93)

0.012

≥ 365

0.77 (0.63–0.93)

0.006

ns = not significant.

When the light begins to fade

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be.

We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.

Atul Gawande. Being mortal. London: Profile Books, 2014.

Atul Gawande, 49, is a general surgeon at the Brigham and Women’s Hospital in Boston and holds academic positions in the Harvard Medical School and School of Public Health. He is also a writer. Being mortal uses both his clinical experiences and literary skills as they relate to the care we give, or should give, when our patients enter the twilight zone between responsiveness to medical and surgical interventions and when they move beyond the reach of our finest instruments and technical remedies.

The central question of the book is not new, nor are the answers. The question is this: given the inevitable decline in capacity as we age, especially when sick, how can medicine best assist us? The answer is that by determining what it is that patients perceive to be what gives their life purpose, we should work with them so that it can be achieved. Of course, that is not always possible but it is more likely than we may think.

The book is packed with cases that demonstrate that this is so. Each page is informed by Gawande’s clinical experiences, including interviews with hundreds of patients and family members about their experiences of illness and ageing, as well as discussions with health care workers including aged care, nursing, palliative care specialists, geriatricians and other experts in the field.

Gawande’s arguments derive from, and are informed by, the immediacy of his clinical practice. The book contains eight chapters: The Independent Self, Things Fall Apart, Dependence, Assistance, A Better Life, Letting Go, Hard Conversations, Courage, and a personal epilogue about Gawande’s experience as he shared his father’s final journey over years with cancer.

Gawande was born to Indian parents (both doctors) in Brooklyn and grew up in Athens, Ohio. He graduated first from Stanford in 1987 and was a Rhodes Scholar in philosophy, politics and economics at Balliol College, Oxford, in 1989. He completed his medical studies at Harvard in 1995. A political activist, he helped the first Clinton presidential campaign and worked on his ill fated health care reform efforts. He has published highly acclaimed articles with The New Yorker on medical matters (including the chapter in this book entitled Letting Go) and became a staff writer there in 1998. He gave the 2014 Reith Lectures on BBC Radio 4 on The Future of Medicine; his first presentation entitled Why do Doctors Fail? He wrote Being mortal at the Rockefeller villa in Bellagio, Italy.

The medical curriculum and mortality

Gawande observes:

I learned about a lot of things in medical school, but mortality wasn’t one of them . . . What worried us was knowledge . . . Yet within a few years, when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them.

His is not a book about palliative care and certainly not about euthanasia, although both feature in it: rather, it is about discerning together with patients and carers who have entered the twilight zone what their wishes are about the life that lies ahead of them, and then making judicious choices — sometimes heroic, sometimes quiet and low-key — in relation to therapy and support that are most likely to enable and enhance those choices.

People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware [even at the expense of foregoing narcotic analgesics], not being a burden on others, and achieving a sense that their life is complete . . . The question therefore is not how we can afford [our system of technological care]. It is how we can build a health care system that will actually help people achieve what’s important to them at the end of their lives.

Gawande heads up a health system innovation centre at Harvard.

Gawande’s book is a gallery of portraits of patients, carers and doctors and a document of conversations with them that reassure, challenge and inspire. Oliver Sacks, himself a great medical writer, says:

Being Mortal is not only wise and deeply moving, it is an essential and insightful book for our times, as one would expect from Atul Gawande, one of our finest physician writers.1

Late for Christmas? Consider giving yourself a copy for the new year!

What can we do to help Australians die the way they want to?

A different service mix could better meet end-of-life care needs for little additional cost

Australians are not dying as they would wish. Surveys consistently show that between 60% and 70% of Australians would prefer to die at home, and that residential care facilities are their least preferred option.1

Dignity, control and privacy are important for a good death. Choice over who will be present, where people will die and what services they will get, matters. People want their symptoms to be well managed, and they want personal, social and psychological support. It is important to have the opportunity to say goodbye and leave when it is time to go without pointlessly prolonging life.2

But dying is now highly institutionalised. Over the past century, the proportion of deaths at home has declined and that of deaths in hospitals and residential aged care has increased. Today only about 14% of people die at home in Australia. Fifty-four per cent die in hospitals and 32% in residential care. Home and other non-institutional deaths are about half as prevalent in Australia as they are in New Zealand, the United States, Ireland and France.3

Paradoxically, the likelihood and timing of death is now more predictable and there is more opportunity and time to prepare for death because people are now much more likely to die from chronic disease in old age. But dying is not discussed, and we are not taking the opportunity to help people plan and prepare for a good death. As a result, many experience a disconnected, confusing and distressing array of services, interventions and relationships with health professionals when they are dying.

Having the conversation

When asked, most people have clear preferences for the care they want at the end of their life. But these preferences are rarely articulated, and they are not supported by the open, systematic conversations that are needed to ensure effective end-of-life care plans. Instead there is an unspoken faith that science and medicine can put off the inevitability of death.4,5

As a result, intrusive and burdensome interventions, including emergency and hospital admissions and intensive care often continue when there is little point. Palliative care is not discussed, offered or provided, and services are variable, inconsistent and fragmented, particularly for support at home and in the community. Women, single people, older people and Indigenous people die in hospital at a higher rate than the general population. People with culturally and linguistically diverse backgrounds and those from rural communities are more likely to find access to services more difficult.6 These issues will become more prominent in public policy as the baby boomers age and the crude death rate doubles over the next 25 years.7

Four reforms would facilitate a good death. First, we need more public discussions about the limits of health care as death approaches, and what we want for the end of life. Second, the public discourse needs to be translated into personal choices. People need to plan better to ensure that their desires for the end of life are complied with. Third, we need to ensure that if patients have expressed wishes about the care they want at end of life, those wishes are followed. Fourth, services for those dying of chronic illness need to be reoriented so that they focus more on people’s wishes to die at home and in homelike settings, rather than in institutions.

Encouraging people to plan for death

Failure to talk about and plan for death in advance is one of the most significant obstacles to improving the quality of dying. Having these conversations and making these plans is not easy. When death is near and the quality of life is low, it is hard to know how far to pursue treatment, especially when the treatment is stressful, intrusive and likely to further reduce quality of life. Decision making is even more stressful if there has been no previous discussion about treatment preferences so that choices must be made in the pressure cooker environment of a hospital.

Public education programs have been used with great success in other parts of the health sector to educate the public and set the preconditions for policy change.

People could be encouraged by a public education campaign to consider and discuss their end-of-life preferences with their families and appropriate health care professionals, and document them in advance care plans. A national public education campaign would focus on encouraging people to discuss their preferences and choices for end-of-life care with health professionals, including general practitioners.

We estimate that a national campaign of 12 to 18 months’ duration that encompassed mass media, public relations, online and digital media, direct marketing and education campaigns would cost $10 million.

There are now well developed and effective approaches for systematic discussion of end-of-life treatment and care and the development of advance care plans. Yet much greater encouragement and incentives are required to ensure that those plans are much more widely implemented.8

Health professionals are in the best position to initiate end-of-life discussions. However, they must shift their focus from prevention, cure and rehabilitation at appropriate points in time if these conversations are to occur. It is therefore important that it becomes normal and expected practice for health professionals to discuss and plan for end of life with their patients when it is appropriate. End-of-life plans are personal expressions. They should set out personal choices about the type and level of intervention a person wants: from aggressive intervention through to less interventionist and palliative care.

Initiating discussions about intentions at the end of life can be hard so we propose that “trigger points” for mandatory discussions about intentions be introduced:

during health assessments for people aged over 75 years;
for all residents of aged care facilities and for high-needs recipients of home-based care packages as part of assessment and care planning; and
for all hospital inpatients who are likely to die in the next 12 months.

Advance care plans are important, but are not in themselves enough to ensure that the wishes of dying people are met and that end-of-life care is improved. Additional measures need to be in place to ensure that plans are implemented as part of systematic and patient-centred end-of-life care.

What is needed for good end-of-life care?

Good care at the end of life is coordinated and multidisciplinary. Yet this is difficult in Australia’s largely siloed health system. As well, people receiving palliative care often transfer between health care settings, such as home, general practice, specialist medical, outpatient subacute, residential care and hospital.

It is essential to improve the coordination of end-of-life care, as hard as that is to do in a fragmented system. Effective strategies include the use of care coordination, case conferencing and team discussion. People who are dying often need a well qualified and authoritative health professional to act as an advocate for them to get the care they need.

Legislative frameworks and guidelines for advance care plans need to change. They should include clear mechanisms for assigning specific responsibility to health care professionals to coordinate and implement plans when people enter end-of-life care.

If the wishes of most Australians to die at home are to be met, end-of-life care will have to change. More support for dying at home will be required.

Carers say they do not get the support they need from partners, family or health professionals. The end of life does not follow a common trajectory. Often patients who have been discharged home will have a crisis episode that carers have to manage. The inability to manage a crisis at home is one of the main reasons that people at the end of their life are admitted to hospitals via emergency departments. It is not surprising that carers struggle to cope: only 13%–18% of carers report that they could access services such as health professionals, community organisations and government services in a crisis.9

It is clear that community-based palliative care can reduced the burden on carers and significantly increase the proportion of people who are able to die at home. But this will require a significant increase in the availability of community-based palliative care. Packages to support dying at home include coordination, nursing and personal care, specialist medical services where required, carer support and respite.

The number of people dying at home would have to double to reach 30% of all deaths, a level comparable to Korea, Singapore, Ireland, France, Austria, Croatia, the United States, Cyprus and New Zealand. To support these people with home-based care packages would require 39 000 more packages per year to be made available for those who are likely to die within the next 3 months.3

What will it cost?

We estimate that the average cost of community palliative care packages is about $6000 for the last 3 months of life. Extending the availability of community packages to enable 30% of Australians to die at home would require an additional investment of $241 million.10

Increased home and community care for the dying is likely to reduce the demand on hospital and residential aged care services. If that demand declined in proportion to the increased number of people dying in the community, we estimate that costs would reduce by $324 million in acute and subacute hospital sectors and $275 million in residential care institutions for an overall saving of $50 million.

Taking into account the additional estimated cost of community-based palliative care packages and the savings in residential and hospital services, a net cost of $84 million is estimated as a result of the increase in community-based support for people who are dying.