Exploring Perception of Terminally Ill Cancer Patients about the Quality of Life in Hospice based and Home based Palliative Care: A Mixed Method Study

INTRODUCTION

Cancer is the second leading cause of death globally and is responsible for an estimated 10 million deaths in 2020.^[1] Globally, about one in six deaths is due to cancer. Approximately 70% of deaths from cancer occur in low- and middle-income countries.^[2] There are estimated 2.5 million people living with cancer in India, with every year about 700,000 new cancer cases registered.^[3] The International Agency for Research on Cancer GLOBOCAN project has predicted that India’s cancer burden will nearly double in the next 20 years, from slightly over a million new cases in 2012 to more than 1.7 million by 2035.^[4]

It is estimated that over 40 million people require palliative care each year out of which over 20 million require palliative care near the end of life (EOL).^[5] It is estimated that in India, the total number of people who need palliative care is likely to be 5.4 million people a year.^[6] Although palliative care services have been in existence for many years, India ranks at the bottom of the Quality of Death Index in overall score and lacks the awareness and existence of hospice (HS) care. According to the Worldwide Palliative Care Alliance, although >100 million people across the world would benefit from HS and palliative care annually.^[7]

Thus, it is important that patients with cancer are educated about their options for care at the EOL, which can be provided in different settings such as HS and even at patients’ home (HO).^[8,9] However, less research has focused on defining quality EOL care when the patient is at HO or HS. HS provides palliative and supportive care to patients at the EOL through an interdisciplinary team of providers who address the physical, psychological, social and spiritual needs of patients and their families.^[10] It is aimed to ‘Add life to days and not days to life’ of cancer patients in advanced stages. It is, therefore, important to understand the potential preferences of terminally ill cancer patients in improving quality of life (QOL) in different healthcare settings, particularly HS-based and HO-based palliative care.

MATERIAL AND METHODS

This comparative study was conducted at the Community Oncology Centre among 68 terminally ill cancer patients who were receiving HS-based and HO-based palliative care for 2 months permitted by the Indian Council of Medical Research. In this parallel and mixed method study, qualitative data were the primary component and quantitative data were the secondary component with both components executed simultaneously.

The study permission was obtained from the Institutional Ethical Committee before commencing the study. Before each interview, patients were explained the purpose of these questions and their participation was requested with written consent. Assurance for confidentiality was given. The study was restricted to patients being 18 years of age or over, with a diagnosis of being in a terminal stage of cancer and having no difficulty with communication. Paediatric patients, cognitively impaired, clinically depressed/ withdrawn or those denying to give consent were excluded from the study.

Interview data were recorded by taking extensive notes during interviews along with an audio recording taken in Hindi language. Interviews were transcribed verbatim and a thematic approach was adopted to analyse the qualitative data findings. The interviews, transcription, translation and thematic analysis were performed independently by the principal investigators (Patel D. and Patel P.), each following the six steps proposed by Braun and Clarke (2006).^[11] Both are proficient in Hindi and English. In Step 1, data familiarisation was achieved through a repetitive reading of all transcripts. In Step 2, relevant data were organised into meaningful codes. In Step 3, codes were classified into potential themes. They were then carefully reviewed in Step 4. Step 5 involved naming and clearly defining the themes. In Step 6, the report was written with the support of a literature review. The researchers compared their initial analyses and agreed on theme definitions and a common thematic structure. In case of any discrepancy, a third author was asked to review the themes and codes (Makadia K.). The codes and themes were reviewed by other authors before reporting.

Cella et al. Functional Assessment of Cancer Therapy-General, Version 4 (FACT-G v. 4), a questionnaire available in Hindi language was used for the assessment of the QOL.^[12,13] In an attempt to quantify QOL, many scales have been devised, revised and adapted over the years including the University of Wisconsin – QOL, European Organisation for Research and Treatment of Cancer QOL Quotient-C30 and McGill QOL; however, for this study, the FACT-G questionnaire was preferred for its simple language and easy scoring system. It is comprised of four subscales: Physical well-being (PWB; 7 items, score range 0–28), social/family well-being (SWB; 7 items, score range 0–28), emotional well-being (EWB; 6 items, score range 0–24) and functional well-being (FWB; 7 items, score range 0–28). All items in FACT-G use a 5-point rating scale (0 = not at all, 1 = a little bit; 2 = somewhat; 3 = quite a bit and 4 = very much). The FACT-G total score is computed as the sum of the four subscale scores, provided that the overall item response is at least 80% (i.e., at least 22 of the 27 items were answered) and has a possible score range of 0–108 points. Higher subscale and total score indicate better QoL. Questionnaire data were entered and analysed using an appropriate statistical test on Microsoft Excel.

RESULTS

The present study was conducted at Community Oncology Centre. Around 38% of the cancer patients belonged to the 40–50 years of age group. Sixty-five patients (95%) were married. About 47% of the cancer patients (n = 32) had primary education, 29% had secondary education (n = 20) and about 16% of them were illiterate (n = 11). Around 49% of the participants (n = 33) belonged to a joint family. Among the 68 patients, around 75% of the cancer patients had a positive history of addiction such as smokeless tobacco consumption (51%), smoking (22%) and alcohol consumption (1.47%). According to the modified Prasad classification, the majority of the beneficiaries belonged to socioeconomic Class 5 (61.8%). Other sociodemographic characteristics are shown in [Table 1].

[Figure 1] shows that the majority (44.1%) of the cancer patients had oral cancer. Among them, 22 (73.33%) were male and 8 (26.67%) were female. Around 29% of females had breast cancer among all the female study participants. There was almost equal participation from both HS- (51%) and HO-based (49%) palliative care receiving participants. The provision of palliative care services at either setting resulted in a better performance in the domain of social and emotional dimensions while the participants had an average performance in the physical and functional well-being dimensions, as shown in [Table 2].

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Figure 1:

Distribution of study participants according to the type of cancer.

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Among all the four subscale scores, PWB and EWB subscale scores were statistically significantly associated with the place of palliative care while the differences in the other two subscale scores were not associated [Figure 2].

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Figure 2:

Illustrating subscale scores at both the settings.

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FACT-G total score was high among patients receiving HO-based palliative care (mean = 67.64) compared to HS-based palliative care (mean = 56.56) and the difference between their total FACT-G scores was statistically significant (unpaired t-test = 2.20, P = 0.03) as represented in [Table 3].

DISCUSSION

The present study has similar patient demographic profile as found in the study conducted by Singh^[13] in Delhi, India. The qualitative data (primary component) in the present study strongly favours HS-based setting more than HO-based setting. The continuous presence of caregivers (professionals) is a cardinal benefit of facilities like HS, Casarett et al.^[14] and a sense of safety is of utmost importance for terminally ill patients living at HO, Gott et al. and Goldschmidt et al.^[15,16] The qualitative data of this study also show findings of similar perceptions of participants who make them prefer HS care over HO care.

The FACT-G total score is higher in patients receiving HO-based palliative care (67.64) than those receiving HS care (56.56) and the difference between the scores is significant. However, the patients undertaken in this study at both settings were given treatment by the same palliative team staff at some point, so further studies need to be conducted which take into account patients that are not at all in touch with the palliative team while receiving HO-based care to eliminate this confounding factor. Higher scores among HO-based patients may be a reflection of the fact that patients get admission to HS generally when they get worse and need advanced care. HO-based patients being closer to their families, HO environment and society as a whole were emotionally more secured contrary to HS centre that allowed only one family member to accompany the patient during their admission period, resulting in higher EWB scores in HO-based participants.

The actual choice of where to spend the last phase of life seems to be the result of negotiation between the patient and their families, in which the perspective of both is important, Gomes and Higginson.^[17] Our study confirms this; because when the family members were not supportive, participants yearned to stay at the HS till their last breath. The moral support and consistent care provided by the HS staff had a significant impact in uplifting the lives of patients who were ready to give up due to their illness while the staff’s continual visits at patients’ HO s provided a sense of security to the patient’s family which helped them to better cope with distressing times.

CONCLUSION

Overall, with the primary component favouring HS care and higher scores obtained in HO-based patients, the present study advocates the necessity for the palliative services to expand their coverage regardless of whether they are provided at HS or HO; as it has improved the QOL of cancer patients significantly. Plus, when the HS patients were asked of choosing between staying at HO or in HS all of them had a definite answer of staying at HS. Not a single patient complained about the HS services, with many refusing to get discharged which are a huge success for palliative medicine in itself.