|Year : 2015 | Volume
| Issue : 2 | Page : 61-66
Interval between first palliative care consultation and death among patients in a comprehensive cancer center in Saudi Arabia
Sami Ayed Alshammary1, Abdullah Alsuhail2, Balaji P Duraisamy2, Saad Hamad Alabdullateef2, Savithiri Ratnapalan3
1 Department of Palliative Care, King Fahad Medical City; Department of Palliative Care, Centre for Postgraduate Studies in Family Medicine, Riyadh, Saudi Arabia
2 Department of Palliative Care, King Fahad Medical City, Riyadh, Saudi Arabia
3 Department of Paediatrics, Dalla Lana School of Public Health, Toronto, Ontario, Canada
|Date of Web Publication||30-Apr-2015|
Sami Ayed Alshammary
King Fahad Medical City; Centre for Postgraduate Studies in Family Medicine, Riyadh
Introduction: Palliative care is a multidisciplinary approach that aims to improve the quality of life of patients with life-threatening illnesses. It has been recognized as a crucial part of patient care in oncology. Palliative care service was established in the comprehensive cancer center of King Fahad Medical City (KFMC), Riyadh, Saudi Arabia in March 2010. The objective of this study was to determine the interval between the first palliative care consult (PCC1) and death, and explore the possible cause of suggestive short timeframe between PCC1 and death.
Patients and Methods: This study included 210 cancer patients who had their PCC1 in KFMC within the period of March 2012 and March 2014. Demographic information, cancer diagnosis, date of cancer diagnosis, reason for referral, all symptoms reported in Palliative Care Unit, and date of death were gathered from the patients' charts. The interval between the PCC1 and death were computed and analyzed.
Results: Of the 210 patients, 121 (57.6%) were female, 127 (60.5%) were <60 years old, and 190 (90.5%) had non-haematological tumours. The main reasons for referral were symptom control (62.4%), symptom control and end of life (EOL) care (12.4%), symptom control and transfer of care (11.4%), and EOL care (8.6%). The median interval between PCC1 and death, diagnosis to PCC1, and diagnosis to death intervals were 19, 212, and 360 days, respectively. Patients diagnosed with haematological tumours were referred relatively earlier to palliative care. The difference in the mean (haematology > non-haematology) for the interval between PCC1 and death was 146.2 days (P < 0.001).
Conclusions: Late referrals to palliative care services KFMC is the strongest predictor of the short interval between PCC1 to death of advanced stage cancer patients. Identifying the potential cause of the late referrals can lead to developing optimal policies for the timely referral of cancer patients to palliative care upon diagnosis regardless of the stage of their disease. Education and advocacy are needed among the referring oncologists in the cancer center for earlier access to palliative care. Future studies are needed to establish the appropriate timing of the PCC1.
Keywords: Cancer, consultations, death, diagnosis, multidisciplinary, palliative care, timeframe
|How to cite this article:|
Alshammary SA, Alsuhail A, Duraisamy BP, Alabdullateef SH, Ratnapalan S. Interval between first palliative care consultation and death among patients in a comprehensive cancer center in Saudi Arabia. J Health Spec 2015;3:61-6
|How to cite this URL:|
Alshammary SA, Alsuhail A, Duraisamy BP, Alabdullateef SH, Ratnapalan S. Interval between first palliative care consultation and death among patients in a comprehensive cancer center in Saudi Arabia. J Health Spec [serial online] 2015 [cited 2020 Jun 4];3:61-6. Available from: http://www.thejhs.org/text.asp?2015/3/2/61/156107
| Introduction|| |
The World Health Organization (WHO) defines palliative care as "an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual aspects of patient care." For palliative care to be delivered in such a holistic manner, patients have to be referred as early as needed to palliative care. The American Society of Clinical Oncology and recent randomized controlled trials advocate palliative care referral at the time of diagnosis of cancer and for other patient with the high symptom burden., Recent guidelines encourage referral to palliative care at the time of diagnosis of cancer as a standard of care.
The review of the literature on this topic revealed that the median time interval between palliative care referral and death was 1.9 months for 240 consecutive patients at M.D. Anderson Cancer Center. Other studies also suggest that primary physicians who are familiar with palliative care make earlier palliative care referrals as compared to those with limited or no palliative care experience., It has been demonstrated that palliative care consultation (PCC) at the time of diagnosis can improve the quality of life, decrease depressive symptoms, and prolong life in patients with metastatic cancer. Another study examined factors that influence early referral and found that younger patients, i.e., with head and neck cancer, and patients with shorter disease duration were more likely to be referred early to palliative care.
Palliative Care Unit (PCU) was established in the Comprehensive Cancer Center, King Fahad Medical City (KFMC) on March 2010. This unit consists of nine inpatient beds, outpatient and home care services and is staffed by PCC5, three assistant consultants, two trainee physicians (fellows) and one specialist nurse coordinator. Bedside nurses are assigned for patients according to acuity. The time from referral to the consultation is within 1 day. Patients with advanced stage cancers are referred to PCU for advice, transfer of care and further management. However, the referrals seemed to occur relatively late in the disease trajectory, mainly for the management of severe physical and psychological distress. The objective of this study was to explore the pattern of referral to KFMC-PCU and the timeframe from first PCU referral (PCC1) to death (interval: PCCi) of patients with advanced cancer diagnoses.
| Patients and methods|| |
Data for this study were gathered from 210 patients who were seen for the 1st time in PCU from March 2012 to March 2014. This time period was chosen as it eliminated the potential initial slowness of referrals. The patients were identified through the PCU death statistics and medical records were accessed through the electronic medical records system data.
Institutional Review Board approval was obtained for the study.
The data collection team consisted of the primary investigator (SAA, a physician specialized in palliative medicine), a research nurse, and a medical student. The data collection team identified all the patients diagnosed with advanced stage cancer in referred to the Palliative care center between March 2012 and March 2014 and also checked death records and found that all of them had died at the time of data collection. The team undertook a comprehensive chart review utilizing the electronic medical records to collect information relevant to the patients' demographic features (age at the PCC1, gender, and nationality), the cancer diagnosis (location and type), the date of cancer diagnosis, disease status (metastatic/non-metastatic), reason(s) for referral, the date of PCC1, and the date of death.
Statistical analysis procedure
Descriptive statistics was used to quantify patients' demographics, disease features, and different intervals. Intervals between cancer diagnosis to death, cancer diagnosis to PCC1, PCC1-D were computed. Categorical variables like gender, age group and nationality along with others were presented as numbers and percentages. Medians and 95 confidence intervals (CI) were calculated for continuous variables-interval PCCi (PCC1-D), the interval between diagnosis to death and interval of diagnosis to PCC1. Chi-square/Fisher's exact test was used according to whether the cell expected frequency is smaller than 5 and it was used to determine the significant relationship among categorical variables. Independent sample t-test was used as per the condition of categories of the variable to determine the significant differences of all intervals. P <0.05 was considered as statistically significant. All patient data were entered and analyzed using statistical package SPSS Version 22.
| Results|| |
There were 210 patients who were referred to palliative care and died during the study period. Of the 210 patients, 121 (57.6%) were female, 127 (60.5%) were <60 years old, 190 (90.5%) had non-haematological tumours, and 199 (94.8%) were Saudi patients. The distributions of other demographic variables are represented in [Table 1].
The main reasons for referral [Table 2] were symptom control (62.4%), symptom control and end of life (EOL) care (12.4%), symptom control and transfer of care (11.4%), and EOL care (8.6%). As expected, most of the patients had non-haematological cancers (90.5%) and were metastatic (84.3%) at the time of diagnosis. At the time of PCC, the percentage of metastatic disease went up to 91.4% from 84%. Moreover, 94% of patients were under the Do Not Resuscitate (DNR) order at the time of referral.
[Table 3] shows that the median first consult (PCC1 to Death interval (PCCi), Diagnosis to PCC1 interval, and Diagnosis to Death interval were 19, 212 and 360 days respectively. [Table 4],[Table 5] and [Table 6] show the association of the intervals (i.e. PCCi, Diagnosis to PCC1, Diagnosis to Death) with type of malignancy (haematological vs. non-haematological), stage at diagnosis and at referral (metastatic vs. non-metastatic). It can be seen that there is a statistically significant difference (P< 0.001) for PCCi between haematological and non-haematological malignancies (146.2 days). Even though there were many differences between intervals and other parameters, these differences were considered not statistically significant.
|Table 3: Interval between initial palliative care consultation to death, interval between cancer diagnoses to death, and interval between diagnosis to PCC1 (n=210)|
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| Discussion|| |
Our results show that the timing of palliative care referrals is suboptimal in our institution. Although early referral to palliative care for cancer patients is generally recommended, the timing of it has not been easy., 'Most of the studies show that even though patients with haematological malignancies tend to be referred later compared to those with non-haematological malignancies, patients with haematological malignancies live longer than those with solid tumours which could be associated with the fact that patients with hematologic malignancies have lower frequency of major pain syndromes, cachexia, and other sentinel symptoms,,,, and these patients have other viable treatment options despite their advanced disease. Our study found that symptomatic control was the most common reason for referral but fails to demonstrate the differences between haematological and non haematological malignancies.
In this study, we found that the median interval between first palliative consult (PCC1) and death was 19 days. This interval (PCCi) was 210.7 ± 31.6 days for haematological malignancies compared to 64.5 ± 14.8 days for non-haematological malignancies. Though not statistically significant, we observed that the median interval diagnosis to PCC1 in patients with haematological malignancies was less than in patients with solid (non-haematological) tumours, suggesting that hematologists refer their patients earlier compared to oncologists. Patients with haematological and non-haematological malignancies both had a similar diagnosis to death intervals (survival), further validating the earlier referrals from hematologists.
We observed that most of the referred patients were younger than 60 years of age. This observation can be accounted to several factors, like shorter survival period in palliative care for older patients, more aggressive disease trajectory, and earlier referral of younger patients due to increased physical or psychosocial distress.
The sociocultural context of the population makes this study unique. Saudi Arabia has gone through immense developments in the field of medicine and healthcare in the past few decades. However, palliative care is a relatively nascent specialty and is not yet widely acknowledged by the patients and medical fraternity alike.
A huge percentage of Saudis live in the rural areas of the Kingdom, and hence, their lack of awareness and access to proper disease management leads to late and advanced presentations of malignancies. This can be the reason why our study shows no significant difference between haematological and non-haematological cancer patients. Advanced malignancies and poorer compliance could mean worse outcomes for patients with or without a palliative care referral.
Our hospital and other hospitals in Saudi Arabia and the Middle East have expatriates working as healthcare professionals; the majority are non-Arabic speaking. The lack of Arabic language skills poses a huge communication barrier between the patients and the physicians and nurses. The complexities involved in discussing EOL care, DNR/allow natural death orders and referrals to palliative care, against the background of strong religious and cultural values, the need to promote and preserve life, demand particularly Arabic language and communication skills from the health care professionals. This could minimize oncologists' uncertainties about making early referrals to palliative care.
To improve the referral patterns in Saudi Arabia, adequate resources must be allocated to palliative care programs, education for both the clinicians and the public, and funding for research work that will develop optimal referral criteria. By doing this, there will be an increased access to palliative care, and both the healthcare providers and the patients with their family will recognize the importance of timely access to palliative care, and will henceforth improve referral patterns.
There are several factors that can be the reason why oncologists make late palliative care referrals:
Oncologist bias in recommending palliative care
Most often, palliative care and hospice care are mistakenly thought to be synonymous. Some oncologists think that palliative care is only necessary for EOL care. EOL care as the sole reason for palliative care referral could be considered as a key barrier to the implementation of an integrated palliative care-oncology pathway. Oncologists should realize that introduction of palliative care services postdiagnosis to patients with advanced cancer has an important role in alleviating patients' symptoms, reduce patient and his/her family members' distress, improve the quality of life, and possibly prolong survival (especially in the case of those with metastatic nonsmall cell lung cancer).
Researchers found that early referrals to palliative care 3-6 months before death resulted in fewer emergency room visits and hospital admissions, satisfaction with care, improved survival at reduced cost and hospital deaths compared with late referrals., With proper palliative care referral training, medical oncologists in Saudi Arabia have the potential to follow and improve this trend. Development of practice guidelines for specialized palliative care services has proven to be successful in identifying seriously ill patients who are at high risk for early death and who should be priorities for earlier palliative care. Application of such practice guidelines along with repeated education sessions may reduce oncologists' resistance to early palliative care referral.
Palliative care as a recognized specialty
Palliative care must be acknowledged as one of the standards of care for cancer patients. The perception of palliative care as playing only a supportive role at the EOL must be changed. Fully integrating palliative care programs into mainstream cancer care would solve the misconception that palliative care is "anticurative." Palliative care is now considered as part of the dynamic treatment options available to cancer patients. It is the modality of choice to relieve physical and emotional symptoms and improve the quality of life and not just a last resort if the cancer is no longer controllable.
In many developing countries, and in Saudi Arabia, hospice care is not yet well developed and, in fact, is a non-existent idea in many regions. Confusion still persists with the terms "hospice care" and "palliative care" being used interchangeably. Many acute in-patient PCUs are used as hospice and EOL care units. Though this is not wrong, the development of hospice care facilities will clear the confusion in the oncologists mind and promote earlier in-patient palliative care referrals in cancer centers.
Oncologists may assume that it is their obligation to manage the symptoms of cancer patients, and thus referring their patients to PCU may be considered is an evasion of their responsibilities. On the contrary, studies have shown that in this case it is not because the oncologists have poor intention, but rather they are just unable to perform all their tasks.
Role of media in promoting awareness
Recently, WHO recognized that access to palliative care as a human right. However, the mainstream media still does not find palliative care attractive enough compared to the news about new anti-cancer drugs discoveries. The focus remains on curative content, rather than on palliative care which focuses on improving the quality of life and relieving pain and suffering in cancer patients. It is noteworthy that most of the curative treatment options (including the latest) add more suffering to the patient by increasing side-effects, which can be effectively relieved by palliative care. The media has an important role in changing the public perception about palliative care concept - that it improves the quality of life, patient satisfaction and sometimes survival, and is not anticurative. This will perhaps encourage patients and family to demand palliative care services from the health care provider.
Need to expand palliative care services
Palliative care needs to be provided in tertiary hospitals, community hospitals, hospices or homes as there is a huge demand for this service. This requires the development of manpower trained in palliative care- including general practitioners, community and specialist nurses, health educators, physical and occupational therapists, social workers and many other specialists. The newly modified curriculum for medical students at undergraduate and postgraduate levels must emphasis the need for care focusing on quality and not merely the extension of life [Text Box 1 [Additional file 1]].
| Conclusion|| |
The PCC1 to death interval indicates late referral to palliative care services at our center. Education is needed among our referring cancer center physicians for earlier access to palliative care. The media, healthcare regulators, palliative care physicians and the community at large share the responsibility for improving community health by improving palliative care services. Prospective studies are needed to establish the appropriate timing of the PCC1.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]