End of Life Care Practices at a Tertiary Cancer Centre in India: An Observational Study

doi:10.21203/rs.3.rs-2960612/v1

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End of Life Care Practices at a Tertiary Cancer Centre in India: An Observational Study

https://doi.org/10.21203/rs.3.rs-2960612/v1

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published 27 Jul, 2024

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Purpose

To assess the End of life care (EOLC ) practices and the magnitude of futile care in a tertiary cancer center. To find out the barriers in provision of good EOLC in cancer patients.

Methods

An observational study was done on 129 patients. Patients were enrolled using the palliative prognostic index (PPI) in the end of life stages. Socio-demographic and clinical details were recorded. Detailed counselling done by the palliative physician or the oncologist was recorded. The barriers in provision of care were recorded.

Results

In this study initial experience of 129 patients were analyzed. PPI score was > 6 (survival shorter than 3 weeks) in 85 (65.89%) ; 34 (26.36%) had PPI score between > 4 to 6 (survival between 3 to 6 weeks); and 10 (7.75%) patients had PPI score less than equal to 4( survival more than 6 weeks).77 (59.69%) patients preferred home as their place for EOLC while 41(31.78%) preferred hospital, 7 (5.43%) preferred hospice while 4 (3.10%) opted ICU for their EOLC. The most common barrier associated was caregiver related in 34 case, followed by physician related in 14 cases and patients related in 3 cases, because of hope of being cured in hospital, social stigma, fear of worsening of symptoms at home, denial.

Conclusion

EOLC is the least studied part of patient care with various barriers. With proper communication and a good palliative care support, futile treatment can be avoided. With healthy communication we can empower family members and patients for a good EOLC.

End of life care

Futile care

Barriers of end of life care

Preferred place of end of life care

The leading cause of morbidity and mortality in the world is cancer. According to estimates, there will be 10.3 million cancer deaths and 19.3 million new cases worldwide in 2020. According to GLOBOCAN 2020 data, in India a total of 27,20,251 people are living with cancer and 13,24,413 are newly diagnosed cases with 8,51,678 deaths. In India, almost 80% of the cancer cases present at stage III and stage IV[1]. Two-thirds of patients with cancer are incurable at the time of presentation and approximately 20.4 million people had need of palliative care at the end of life (EOLC)[2]. The objectives of EOLC are to achieve a ‘good death’ for all dying patients, to emphasize on quality of life and quality of death and to acknowledge palliative care as a basic human right [2]. The process of EOLC involves recognition of the dying patient, end of life decision making, initiating the EOLC pathway, providing the EOLC, bereavement support and review the care process [2]. Majority of the terminally ill cancer patients prefer to die at their home [3] including in India[2]. The challenges to the provision of EOLC are enormous. These obstacles can be patient related, caregiver related, physician related, legal and ethical.

The unrealistic hope, denial, lack of awareness regarding the disease prognosis and availability of EOLC services, fear and pain of dying, the physical, social, psychological, financial distress all add to the list of patient and caregiver factors inhibiting the growth of palliative care. The physician barriers can be related to practices, knowledge and attitude which include lack of training in communication with the patient, family and the other involved treating physicians, attitude of continuing all aggressive treatment till the end even though it is futile, lack of confidence in taking responsibility for the care of the terminally ill patients[4]. Considering the Indian context, there is lack of legal framework or policies which guide the clinicians on the EOLC or dignified death[2].

The present study is aimed at understanding the EOLC practices and patterns in a tertiary cancer centre in India. The integration of palliative care services and the concept of EOLC is imperative and is the need of the hour so as to help us identify the dying patients and to provide them a holistic care in their last days culminating in a dignified, painless and peaceful death. Also, we need to understand the various barriers which exist at various levels including physician, patient and caregiver which inhibit the provision of EOLC to the dying patients.

This was a prospective observational cross-sectional study which enrolled a total 129 patients with advanced cancer admitted for palliative care, over a period of 18 month at a tertiary care centre in the oncology wing in Northern India. The study was in accordance with the Declaration of Helsinki and Institute Ethics Committee of AIIMS Hospital, New Delhi, India. (Ref. no. IECPG-331/18.07.2018.)

All terminal cancer patients who had been denied further curative treatment were enrolled in this study after getting an informed consent. Ongoing active curative cancer treatment in the form of chemotherapy, hormonal therapy, immunotherapy, targeted therapy or radiotherapy were excluded from the study. Information regarding the disease status which included site of primary cancer, stage of disease, presence or absence of metastasis, histopathological diagnosis, concomitant comorbidities and the treatment underwent like chemotherapy, radiotherapy and surgery was collected in a semi structured proforma for symptoms and disease in addition to baseline demographic data.

Prognostication was assessed using Palliative Performance Scale (PPS) and Palliative Prognostication Index (PPI). In our study hospital and ICU care are indicator of aggressive management and also futile care while home and hospice/cankids are indicator of non-aggressive management.

After recognising patients at the end of life, palliative care team recognised futility of further aggressive management and a meeting was convened with the primary physician and family members to reach a consensus regarding further plan of care and futility of further care. Patients, family members and the treating physician were bought on same page of usual care. Finally, patients/attendants were asked for their choice regarding place where they wanted to live during their end of life phase that is home, hospice, hospital or ICU.

Comparisons between the data groups using appropriate statistical methods like mean, standard deviation were drawn. The chi square test was used to compare categorical variables. For statistical analysis, SPSS version 23.0 was employed.

Socio-demographic details of 129 patients enrolled in the study are given in Table 1.

Table 1

Socio-Demographic details
Demographic Variables	Frequency (%)
Age (Mean± SD, years (Range)	47.87±18.97(2–97)
Sex Male Female	63(48.84) 66(51.16)
Educational qualification Illiterate Up to 5thclass Up to 10th class Up to 12thclass Graduate Post-graduate	19(14.73) 17(13.18) 34(26.36) 13(10.08) 40(31.01) 6(4.64)
Current living arrangement Joint Family Nuclear Family	16(12.40) 113(87.60)
Marital status Never married Married Widower/Widow	24(18.60) 102(79.07) 3(2.33)
Current Employment Status Unemployed Employed	127(98.4) 2(1.6)
Residence Rural Urban	50(38.76) 79(61.24)
Address Delhi Uttar Pradesh Bihar Haryana Others	56(43.41) 30(23.26) 20(15.50) 15(11.63) 8(6.20)

Out of 129 patients, 30(23.26%) had thoracic malignancies, 29(22.48%) had GI malignancies, head and neck malignancy in 26(20.16%) patients, genitourinary malignancies in 17(13.18%) patients, hematological malignancies in 10(7.75%) patients, sarcomas in 10(7.75%) patients and other miscellaneous malignancies in 7(5.53%) patients. The most common symptom was pain as shown in Fig. 1.

Out of 129 patients, 85 (65.89%) had palliative prognostication index (PPI) score more than 6, i.e., survival less than 3 weeks; 34 (26.36%) patients had PPI score between > 4 to 6, i.e., survival between 3 weeks to 6 weeks; and 10 (7.75%) patients had PPI score less than equal to 4, i.e., survival more than 6 weeks. Out of 129 patients, 77 (59.69%) patients and care givers preferred home for their EOLC; 41(31.78%) opted hospital for their EOLC; 7 (5.43%) selected hospice/cankids; and 4 (3.10%) opted ICU for their EOLC as shown in Fig. 2.

Out of 129 patients, 45 (34.88%) patients had aggressive management and 84 (65.12%) patients had non-aggressive management. In 34 cases, family members were want aggressive management; in 14 cases physician and in 3 cases patients wanted aggressive management. There is overlapping, i.e., in same patients more than one barrier present.

In open question, we recorded patients, family members and physician perception regarding aggressive management. The factors which paved the way for aggressive management are listed in the Table 2.

Table 2

Factors responsible for aggressive management in this cohort
Patient related factors	1. Hope to be cured in hospital 2. Could not believe the current situation
Family members related factors	1. Hope of being cure in hospital 2. Social stigma 3. Fear of worsening of symptoms at home 4. Did not understand the current problem(denial) 5. In some case family members sign DNR but did not want to go home
Physician related factors	1. Fear of legal issues 2. Think still curable 3. Overestimate the survival 4. In some case physician did not want to sign DNR but verbally agree with DNR

The present study describes the demographics and end-of- life symptoms in patients presenting with a terminal illness who are deemed unfit for any definitive cancer directed therapies by their oncologists and assesses the preferred place of EOLC in such patients and their loved ones and barriers in provision of EOLC in a tertiary care cancer centre.

The median age in our cross-sectional observational study was 51 years, with patients ranging from 2 to 97 years and male: female distribution was almost equal which was also in other study by C. S. HO et al[5]. In a study by Hui et al, [6] patients have median age of 62 years and 58.5% of them were female. Most of patients in our study were graduate followed by up to 10th class while other study by C. S. HO et al, had education level 0–9 years [5]. In our study most of patients belonged to nuclear family which is also in other study by M. Nayak et al [7]. In our study most of patients were married and living together with their spouse which is also in a study by C. S. HO et al [5].

In our study thoracic malignancies (including Ca lung and Ca breast) were most common diagnosis followed by gastrointestinal malignancies followed by carcinoma head and neck region. In a study by Hui et al, the most common malignancy is gastrointestinal followed by head and neck carcinoma [6]. It may have happened because patient presentation to palliative care clinic is varied in terms of time duration between diagnosis of disease and referral to palliative care clinic. In our study, pain was the most common symptom experienced by patients at the end of life followed by dyspnoea, unconsciousness, not accepting feed, vomiting, seizures, nausea, constipation. Similar results have been published in another study by Hui et al [6], pain was the most common symptom followed by anorexia/ cachexia and dyspnea. Occurrence of dyspnea was more in our study patients which could be due to vast proportion of lung malignancies in our study. In their study [6]nausea and vomiting were present in 33 (28.9%) patients which is higher than in our study. In a study by Verhoef et al [8] included only hematological malignancy demonstrated common symptoms experienced at the end of life to be dyspnoea followed by pain, and fever. In our study most, patients had a PPI score > 6 patients representing a majority of terminal patients.

Home care was preferred by most patients during end of life which is similar findings in other studies [9, 10]. Patients wanted to spend time with family and friends which is not possible in a hospital setup in the last hours of life. A few patients preferred hospital for care during end of life period probably because they had fear of worsening of symptoms like pain, dyspnea and the inability to handle such distressing symptoms at home. In a study by A Ghoshal et al, 30 patients (6%) were admitted for difficult symptom management, including refractory pain, breathlessness, and delirium[10]. In our study very few patients preferred hospice for their care during the last days of their life, this may be due to lack of easy availability of hospice care services and fear of getting away from family which also in other studies [10–12] where few patients referred to hospice for various reasons. Earle et al, reported that patients receiving aggressive chemotherapy received lesser and delayed hospice referrals [13].

In our study magnitude of futile treatment was 34.88% in the form of hospital and ICU admission during their end of life. In a study by S. T. Tang et al, most patients (86.12%) were found to have aggressive management in form of use of chemotherapy, multiple emergency department visits, one or more hospital admissions, more than two weeks of hospital admissions or any ICU admission(50%) during the last month of life or death in the hospital[14]. Our study had less aggressive management as we excluded patients undergoing any chemotherapy, and the markers of aggressive EOLC were chosen as hospitalisation till the end of life and an ICU admission. Another study by J. Jacob et al, found that 52% of patients received aggressive management in form of intravenous chemotherapy in the last two weeks of life, the majority being children with hematological malignancies where the disease was considered still curable[15]. They also had lesser palliative care referrals than patients with solid tumors.

In our study most common barrier to quality EOLC is family members. Family members were found to be more reluctant to home based care because of social stigma associated with EOLC, fear of worsening of symptoms at home, facing other relatives and associated social stigma. Several studies [13, 16–18] found that it was a combination of the treating oncologist’s difficulty in transitioning from curative to palliative care and the unrealistic expectations from patients and their families. Also, physicians tend to overestimate the chance of survival [19, 20]. In a study by T. S. Chang et al, suggested that treating physician had more aggressive attitude in treating patients at their end of life and gave more intensive management to their patients [21]. Another study by S. E. Harrington et al, treating physicians did not feel comfortable while talking on the topic of impending death, breaking bad news and referring to palliative care [18]. In a study by R. Matsuyama et al, patients had unrealistic expectations and wanted chemotherapy for cure [22]. In our study physician are second most common barrier in providing good end of life care hence we already excluded the patients getting chemotherapy while they had taken chemotherapy as aggressive management.

End of life care is the least studied part of patient care with various barriers. By addressing these barriers and with proper communication and palliative care, futile treatment can be avoided. We can empower patients and family members for a good death by encouraging healthy communication.

Ethics approval: The study was in accordance with the Declaration of Helsinki and Institute Ethics Committee of AIIMS Hospital, New Delhi, India. ( no. IECPG-331/18.07.2018.)
Funding: None
Conflict of interest: Authors declare no competing interests.
Data availability: N/A
Code availability: N/A
Authors Contributions: BPM designed the study, did literature search, data extraction, analysis and interpretation and writing the manuscript; RG assisted in analysis and interpretation and writing of the manuscript and supervised the work; PR, SM, SJB, VK, NG, RG performed literature search and screened articles by title and abstract; SB was involved in the study design, supervision of the development of the work, assisted in performing the literature search, data analysis and interpretation and writing of the manuscript.
Consent to participate: Informed consent was obtained from all individual participants included in the study.
Consent for publication: Patients signed informed consent regarding publishing their data.

Source(s) of support: None

Presentation at a meeting: None

Conflicting Interest : None

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No competing interests reported.

Download PDF

Journal Publication

published 27 Jul, 2024

Read the published version in American Journal of Hospice and Palliative Medicine® →

Version 1

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End of Life Care Practices at a Tertiary Cancer Centre in India: An Observational Study

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Abstract

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INTRODUCTION

MATERIALS AND METHODS

RESULTS

DISCUSSION

CONCLUSION

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References

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