Hospice Care in Improving the Quality of Life of Elderly Patients: Assessing the Level of Awareness in Geriatric Centres

INTRODUCTION

The World Health Organisation specifies palliative care as a crucial part of integrated, people-centred health services. It is a global ethical responsibility to relieve chronic health-related suffering and be it physical, mental, social, psychological or spiritual. The need and availability of palliative care at all levels, namely primary, secondary, and tertiary, are essential in preventing the suffering of patients diagnosed with diverse conditions such as cardiovascular disease, acute traumatic conditions, cancer, organ failure, drug-resistant tuberculosis, end-stage chronic illness, birth-related complications or extreme symptoms of old age. As per the American Cancer Society, hospice is a special kind of care that focuses on a person’s quality of life and dignity as they near the end of their life. Hospice care is based on the philosophy that death is just the final stage of life. It is important to live fully and comfortably to maximise the possibility of spending the time that is left with the patients in a surrounding of their family and caregivers. The quality of life is extremely essential in the last stages of life.

The last few decades have seen a global increase in the geriatric population. Even in India, the population is ageing, and the proportion of elderly living with diseases is as high as 50%, with an estimated increase of 10.1% in 2021 to a projected increase of 13.1% in 2031 (similar trends in rural and urban populations).^[1] This rising number is one of the prime factors for the concept of hospice care gaining momentum around the world. India, being a country with an increasingly dense population belonging to diversified strata of socio-economic backgrounds and a large number of people suffering from chronic diseases, has its challenges in achieving Health for All. It is an even bigger challenge, especially in terms of providing hospice care or end-of-life care to a vast number of patients. Dr. M. R. Rajagopal, who is widely regarded as the country’s ‘Father of Palliative Care’, made extensive efforts to felicitate the government in making optimum utilisation of hospice care for maximum people over time. The Shanti Avedna Sadan is India’s first hospice care facility that works for advanced cancer patients who are at the end stage of the disease. This unique facility provides the much-needed skilled care to the patients, together with the warmth of a home.^[2]

The first step towards achieving the goal of accessibility of hospice care to the needy segment is to generate acceptance of its importance in improving the quality of life of patients. This demands an increased level of awareness about its benefits, especially amongst the providers and the patients requiring hospice care. At present, India is heading steadily towards betterment in the field of palliative care, but it is a long way to go to achieving maximum coverage. Although there are more than roughly 1000 palliative care units in India at the moment, with over 90% of them concentrated in Kerala, there is a strong need to work towards generating a better level of awareness for palliative and hospice care.^[3] There is also a need to conduct more research in the field of hospice care and include evidence-based practices in improving the quality of life of patients. The availability of more data in this field will help patients and their caregivers to make informed choices to select the best possible strategies to live better in the end stage of life.^[4]

MATERIALS AND METHODS

The study was conducted amongst elderly patients aged between 60 and 75 years (mean age: 65) belonging to both genders, dwelling in the geriatric centres through a questionnaire survey. The Mini–Mental State Examination was administered before the survey to ensure screening for any mental impairment and difficulty in understanding the questionnaire by the participants. Informed consent was obtained from the participants, and the purpose of the study was well-informed before the collection of data. A total of 120 elderly individuals were randomly selected from 10 geriatric centres in and around Delhi/National Capital Region. Amongst the sample included for the data collection, 72 participants were females and 48 were males suffering from common conditions in older age, including vision and hearing loss, refractive errors, joint pain and osteoarthritis, chronic obstructive pulmonary disease, hypertension, and diabetes. The included participants’ educational level suffices for the understanding of the questionnaire used for the data collection.

The intraclass correlation coefficient, which is a relative measure of reliability, was used to evaluate the internal consistency of the questionnaire. The Cronbach’s alpha value obtained for the questionnaire was 0.7, indicating good reliability. The content validity of the questionnaire was established by the experts in the field, and the value for the content validity index was 0.8, which indicates good reliability.

The questionnaire consisted of two parts: The initial part for gathering the demographic information related to the participants and the second part covering the specific questions to measure the level of awareness regarding palliative care and hospice care that included questions with close-ended responses like yes/no and a few questions measured on a 5-point Likert scale.

RESULTS

The data collected through the questionnaire were further analysed for interpretation. The level of awareness for palliative care and hospice care facilities was calculated for 120 elderly individuals selected from geriatric centres.

Figure 1a shows that out of 120 elderly participants, 60 (50%) were aware of the palliative care concept and its relevance in the management of patients and symptoms of diseases. They had an understanding of palliative care services and had heard of the term either through their caregivers or healthcare providers.

Close

Figure 1:

Level of awareness regarding the concept of palliative care and hospice care amongst the geriatric population. (a) Palliative care awareness level. (b) Understanding the difference between palliative care and hospice care. (c) Hospice care awareness level.

Export to PPT

Figure 1b shows that approximately 32% of the participants were able to differentiate between the terms palliative care and hospice care, but lacked a clear understanding of their concept and efficacy in managing different patients with varied symptoms and end-of-life care. They were not effectively able to differentiate between the two terms and had overlapping information about the two concepts. Figure 1c shows that 7% of the participants demonstrated a clear understanding of the concept of hospice care in the management of terminally ill patients. The level of awareness regarding the role of hospice care for the geriatric population was present amongst these participants.

It was also noted that the majority of the respondents (70%) had a good level of education, and only 27% of the sample had a current yearly income above 5 lac rupees [Table 1]. Although the present study does not focus on finding the association between variables such as level of education and socioeconomic status on knowledge regarding palliative and hospice care services, further studies may investigate to understand the effect of these variables on the awareness level of the population.

DISCUSSION

The documented global increase in the older population can be attributed to the availability of advanced healthcare facilities for better assessment, treatment, and rehabilitation. The survival of this population is a boon for the community on the one hand, whereas on the other hand is a concern as this segment of the population suffers from multiple comorbidities due to ageing and requires constant monitoring and care for survival.^[5]

Geriatric care is primarily specialised care for the older generation. It becomes more essential for the advancing age from 65 years to 80 years and beyond. This group has a high degree of debility and multiple problems related to advancing age.^[6,7] Geriatric care is a multidisciplinary approach to providing holistic care to the elderly population to improve their quality of life. Each patient requires a comprehensive and exclusive assessment and treatment approach.^[8]

Hospice care will facilitate the ease of passing through the times of terminal illness. It not only focuses on managing the symptoms of the patient but also increases the comfort of the patient and makes the remaining time meaningful. It provides holistic care to the patient with proper nursing care that also includes other needs of the patients, such as emotional, psychological, and spiritual needs.^[9] Globally, only 14% of patients who need palliative care are receiving it. Countries have to strengthen palliative care services to provide universal health coverage and to achieve Sustainable Development Goal 3, ensuring access to good health and well-being.

This calls for the need for better palliative and hospice care facilities to add quality of life to patients’ advancing years. The acceptance and understanding by the patients and the caregivers of providing good palliative and hospice support to the community, especially the geriatric population, requires attention. The misconceptions about the role of hospice care can act as a major barrier to providing quality care for those who require these services.^[10,11] Public awareness is a must in this regard to provide timely help and avoid wastage of time in making informed choices; it is the need of the hour. This awareness will improve the acceptance rate for hospice care facilities when needed and will decrease the level of hesitance.^[12,13] The outcomes of the present study are in accordance with similar research findings from other geographical areas and Western countries, indicating the need for improvement in the awareness level of hospice and palliative care services.^[14-16]

Further research is needed to identify the specific population that may require hospice care in the future and to orient them about its probable benefits at an earlier stage of the disease. The services related to hospice care remain underutilised and may vary by location and population. Hospice care is not limited to cancer patients with limited survival time but is also applicable to a diverse range of conditions.^[17] The increased awareness level will help to focus on identifying other barriers that may limit the utility of these services due to numerous factors such as lack of knowledge, socioeconomic background, misconceptions and fear related to associating hospice care with the idea of death and giving up. Besides informing the public, it is also important that healthcare professionals are educated on and trained in palliative care and hospice care to generate skilled manpower to address this growing population.

CONCLUSION

Hospice care is crucial in improving the quality of life in the terminal phase of chronic diseases in patients. Apart from making effective policies and adequate funding in this area, there is a constant need to understand the best practices in this field. There should be adequate awareness and acceptance of hospice care amongst the target population to improve the overall health status of those requiring it. It will not only ease the discomfort of the patients and provide them with holistic care but also, at the same time, reduce the burden of disease for the caregiver as well as society as a whole.