CanSupport: a model for home-based palliative care delivery in India.

BACKGROUND: According to the 2014 WHO Global Atlas of Palliative Care, there is insufficient access to palliative care services worldwide, with the majority of unmet need in low- and middle-income countries. In India, there are major disparities in access to palliative care, with the majority of services being offered by non-governmental organizations (NGOs) scattered throughout the country. The barriers to expanding palliative care services in India are common to many lower- and middle-income countries-a lack of financial resources, a paucity of trained staff, and a focus on curative rather than comfort care. In this paper, we describe a model of palliative care being used by CanSupport, a non-governmental organization based in Delhi that was formed in 1996. They offer home-based services provided by multidisciplinary teams consisting of a physician, nurse, and social worker who are trained in palliative care. METHODS: Data on patient demographics, services provided, and outcomes were collected retrospectively for patients treated by CanSupport for the year 2009-2010. Sources include CanSupport's population data and direct discussions with CanSupport staff. RESULTS: During the year 2009-2010, CanSupport served 746 patients, with an average of 10 home visits per patient. Only 29% of patients were referred from hospitals or physicians, with the rest being self-referred or referred from CanSupport's help line. Pain scales were administered on each visit and 31% of patients received morphine. Of the 514 patient deaths, 76% occurred at home and a majority of families received bereavement counseling for up to 6 months. CONCLUSIONS: CanSupport has shown that a home-based care model can be successful in India and is desired by patients at the end of life or with chronic illness. Their model of care saves the patients the cost of a hospital visit while still providing evaluation by staff with training in palliative care. In addition, the multidisciplinary nature of the teams allows for symptom management and emotional counseling for both the patients and their families. CanSupport has developed a way to provide reliable, cost-effective palliative care to patients that can serve as a model for building palliative care capacity in low- and middle-income countries.

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation.

AIM: We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. MATERIALS AND METHODS: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). RESULTS: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. CONCLUSION: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.

Can curative or life-sustaining treatment be withheld or withdrawn? The opinions and views of Indian palliative-care nurses and physicians.

INTRODUCTION: Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians' attitudes towards withholding and withdrawal of curative or life-sustaining treatment. METHOD: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programmes in New Delhi, using a semi-structured questionnaire. For the interviews and analysis of the data we followed Grounded-Theory methodology. RESULTS: Withholding a curative or life-sustaining treatment which may prolong a terminal cancer patient's life with a few weeks but also has severe side-effects was generally considered acceptable by the interviewees. The majority of the interviewees agreed that life-sustaining treatments can be withdrawn in a patient who is in an irreversible coma. The palliative-care physicians and nurses were of the opinion that a patient has the right to refuse life-saving curative treatment. While reflecting upon the ethical acceptability of withholding or withdrawal of curative or life-sustaining treatment, the physicians and nurses were concerned about the whole patient and other people who may be affected by the decision. They were convinced they can play an important advisory role in the decision-making process. CONCLUSION: While deciding about the ethical issues, the physicians and nurses do not restrict their considerations to the physical aspects of the disease, but also reflect upon the complex wider consequences of the treatment decisions.