CONCEPT & NEED
The Concept of Hospice
A Hospice can provide care both through inpatient facilities and also through home care programmes. It offers the possibility of a dignified death with the minimal of distress.

A hospice provides palliative care to terminally-ill patients. It aims at helping to control the pain and other symptoms in advanced cancer patients in order that they can achieve the best possible quality of life and a dignified death with the minimum of distress. A hospice offers personal and caring service to both patients and their loved ones by providing information, comfort and basic care.

The staff and the care that they provide
Dedicated volunteers, social workers, spiritual advisers and nurses assist doctors in providing medical and holistic care to terminally ill cancer patients. All facets of the patient's life, the physical, social, emotional and spiritual, are considered to be of the utmost importance. Trained in patient-centred terminal care techniques, staff and volunteers understand that each patient and his needs are unique.

Hospices provide solace and comfort to patients and their families and help them to adjust to the many challenges and losses they face in the terminal phases of cancer. Often holistic by nature, palliative care can provide pain relief, symptom control and support at the time when it is most needed. A Hospice can provide care both through inpatient facilities and also through home care programmes. It offers the possibility of a dignified death with the minimal of distress. After death, the hospice extends loving care to family and friends of the patient during their bereavement.

The Need for Hospices in India
Hospices are very rare in India and only 16 of India's 28 states and 7 union territories (less than 45%) have any palliative care services at all. Many states in India have absolutely no medical facilities that prescribe morphine.

Every human being has a right to die with dignity and minimal distress. In India, cancer patients cannot achieve this. The concept of hospice is well known in the West but in India, where palliative care is so desperately needed, it is almost unheard of.

Late diagnosis and inadequate pain relief
India has one million new cancer cases each year. Seventy five per cent of them are diagnosed at the terminal stage, when it is too late to cure or even treat the patient. To make matters worse, there are very few cancer facilities in India and therefore little time or space in overburdened hospitals for the care of the terminally ill. In plain words, this means that every year in India, tens of thousands of cancer patients die agonizing and undignified deaths without medicine, help and support. Less than 3% of India's cancer patients have access to adequate pain relief. Population density, poverty, bad nutrition, illiteracy, cultural stigma about cancer and lack of awareness about cancer symptoms and palliative care, compound the problem.

Lack of palliative care facilities
Hospices are very rare in India and only 16 of India's 28 states and 7 union territories (less than 45%) have any palliative care services at all. Many states in India have absolutely no medical facilities that prescribe morphine. North India, in particular, is almost completely bereft of any type of support for the terminally ill. Uttarakhanda is one of the 19 states in India that have absolutely no provision for palliative care. Although 5,000 new cases of cancer a year are reported in this state, cancer facilities are conspicuously absent.

Lack of funding, lack of awareness and interest by the medical profession in general, lack of government support and lack of morphine are some of the major difficulties facing development of hospice and palliative care in India.


Poor Quality of Death: The Indian Reality
The Economist Intelligence Unit has given India the lowest ranking in end-of-life care across the world.

The Economist Intelligence Unit index of End of Life Care services show that a high quality of death and dignity is not something that the Indian health care system, the government, or the Indian civil society has been able to give to its dying patients. This is ironical as the Indian culture, traditionally, has accorded high importance to a ‘good death’.

The situation for the rest of the world is not much better. According to the Worldwide Palliative Care Alliance, while more than 100 million people would benefit from hospice and palliative care annually (including family and carers who need help and assistance in caring), less than 8% of those in need access it.

Every region has its own set of problems when it comes to caring for the dying. If in India, there is very little awareness about palliative and end-of-life care, in China, the issue of death is a taboo. In the US, discussion of end-of-life care often inflames religious sentiment that holds the sanctity of life paramount. The issue is complicated by the perception that “hospice care” is often associated with “giving up”.

Palliative care is rarely understood as it is: a type of care which accords importance to human dignity and alleviation of pain, which aims to neither hasten or postpone death, but gives the patients and families the physical comfort and mental and emotional strength they need to deal with a life-altering event.

The Quality-of-death report raised some important issues of the inadequacy of painkilling medicines. The report calls analgesics “the most basic issue in the minimisation of suffering”. The report says that across the world an estimated 5 billion people lack access to opioids, principally due to concerns about illicit drug use and trafficking. Lack of training is also a problem, with many doctors and nurses ignorant of how to administer them.

The report underlines the importance of palliative care even from an economic point of view. It cites the example of Spain, where one study found that in 2006 a shift away from the use of conventional hospital treatment towards palliative care, an increase in homecare and lower use of emergency rooms generated savings of 61% compared with expenditure recorded in a 1992 study.

Among the 40 countries ranked for end-of-life care services they provide to their citizens, UK was at the top of the chart followed by Australia and New Zealand. Sadly India, was at the bottom, behind Uganda.

The Need for Hospices in Uttarakhand
Uttarakhanda is one of the 19 states in India that have absolutely no provision for palliative care. Although 5,000 new cases of cancer a year are reported in this state, cancer facilities are still very few.

The mountainous and isolated nature of most parts of this State make it difficult to reach cancer patients and bring them the necessary awareness about possible help. The activities of Ganga Prem Hospice are aimed at helping create cancer awareness in the State as well as providing free consultation and care.

Cancer in Uttarakhand: Challenges and Opportunities for Control
by Dr Sunil Saini

	Senior Cancer Surgeon, Professor of Surgery at HIHT University. Head of the upcoming Sushila Tiwari Memorial Cancer Researc Institute. Trained in Cancer Surgery at Tata Memorial Hospital, Mumbai and The Memorial Sloan Kettering Cancer Centre, New York. Dr Saini has served this region since 1992 at The Himalayan Institute Hospital as the doctor in-charge of oncology services and currently leads the team to develop the most modern cancer research institute at HIHT.

Infectious diseases, poor nutrition, and poor maternal and infant care have been the main causes of illness and death in the past in our country. With socio economic development, many of these are coming under control. With a change in lifestyle, industrialization and changes in the environment, cardiovascular diseases, accidents, cancer and diabetes are now emerging as the leading causes of illness and death.

Cancer is largely a social phenomenon in origin. Factors such as where we live, changes we bring about in the environment and our choice of lifestyle determine the chances of getting cancer. Lifestyle variables such as the kind of diet we consume may influence ? of cancers which are prevalent, whilst the use of tobacco leads to 50% of cancer in men and 20% amongst women in our country. Alcohol consumption, inadequate physical activity, poor personal hygiene and unsafe sexual activity also increase the chances of cancer. Some cancers may be attributed to infections and genetic inheritance. Influence of these cancer causing agents varies amongst individuals according to their inherent predisposition / ability to fight back.

In the Uttarakhand region, tobacco smoking and alcohol consumption are prevalent and are the main causes of cancer in the male population, specifically leading to cancer of the lungs, mouth, throat, food pipe, stomach and urinary bladder. Over the last two decades the habit of tobacco chewing has become quite prevalent particularly among the young population. Cases of cancer in the mouth are likely to increase in coming years. Cancer of the breast, uterine cervix, gall bladder and ovary are common in women of our State.

All tobacco related cancers are preventable. Some of the cancers such as cancer of the mouth, throat, urinary bladder, breast and uterine cervix are treatable and curable at an early stage. Unfortunately still more than 70% cancer patients are diagnosed in an advanced stage when effective control is not possible.

An Estimate of the Potential Cancer Burden for Uttaranchal
The 2002 GLOBOCAN data for the incidence in India combined with the 2001 Indian census data, allows one to estimate potential numbers of cancer patients in Uttarakhand by District. These are tabulated below.

Estimated Cancer Patient Loads in Uttarakhand by District (Incidence)

IARC’s GLOBOCAN 2002 ASR(W) for incidence in India of 99/105 for males and 104.4/105 for females applied to population data from the Indian 2001 census.

Cancer Control
To address cancer control in a comprehensive manner, the following approaches are adopted.

Primary Prevention
Avoidance of known cancer-causing agents such as tobacco, radiation and choosing a healthy diet and lifestyle (including exercise), reduces the chances of cancer. Vaccinations for certain types of cancer such as primary liver cancer are also recommended. Soon there may be a vaccination against uterine cervix cancer, the most common cancer among Indian women. Large numbers of cancers seen in society can be prevented through such measures. Every individual who is aware of these facts has the opportunity to safeguard themselves against cancer to a great extent.

Secondary Prevention
This involves the early diagnosis of cancer through increased awareness and screening. Some of the common cancers in Uttarakhand, such as breast and uterine cervix cancer in females and cancer of the mouth and pharynx, can be detected early and treated effectively. Self awareness, self examination and regular check-ups by a physician are helpful for the early diagnosis of many treatable cancers.

The Central Government of India has initiated the National Cancer Control Programme through the State Government in five districts, to make these approaches effective. Participation of more agencies including private, philanthropic and social organizations is desirable at all levels. Measures for prevention are an ongoing process with long term objectives.

Treatment
For those individuals with cancers that require treatment, one or more of the following treatment modalities are often involved - Surgery, Radiotherapy and Chemotherapy. With current cancer treatment modalities, more than one third of cancers can be cured and the individual can lead a normal life thereafter. Basic facilities for the diagnosis and surgical treatment of cancer are available in many cities in Uttarakhand State. On suspicion of cancer, a patient needs to consult any qualified physician or surgeon for appropriate guidance. Currently two comprehensive cancer centres with radiotherapy facilities are coming up in our State. One is at The Himalayan Institute Hospital Trust, Jolly Grant, Dehradun in Garhwal and the other is at The Medical College, Haldwani in the Kumaon region. Both centres have started providing radiation treatment.

Palliative Care
Relief from debilitating symptoms, psychosocial and spiritual support, and an opportunity to die with dignity is the right of every individual suffering from end stage cancer. More than 80% of cancer patients finally die of advanced/ recurrent cancer. Effective treatment of symptoms, including pain relief and an understanding to hold back on expensive and aggressive treatment approaches, is vital in providing tender and compassionate care to patients during their terminal illness. Palliative care is an important component of cancer care, but often receives scant attention by treating doctors. Often both physicians and family members may be ignorant and fail to exercise right judgement during terminal stages of cancer; they may continue to pursue an aggressive treatment approach, whereas a gentle approach is often required. Support to bereaved family members is equally important. Initiatives by Ganga Prem Hospice, Rishikesh in this respect would bring awareness among physicians and a great opportunity for suffering cancer patients. Very few such centres exist in our country and it would be a pioneering and pious effort for the benefit of this region.

Research
Strategies for cancer control and treatment approaches can only be driven by good research. Educational Medical Institutions in our State are taking up research in the area of cancer. The upcoming Sushila Tiwari Memorial Cancer Research Institute at HIHT, Dehradun, intends to take up cancer research as its main objective to develop cancer control strategies in this region.

Cancer control and treatment related facilities are evolving in our State. Over the last 15 years a good number of diagnostic facilities – such as X rays, Ultrasound, CT Scan, Mammography and Pathology Laboratories have come up in most major cities in both the public and private sector. Many private labs have their collection centres in smaller towns and reports can be delivered to one’s doorstep. Primary and secondary level treatment facilities are available in many hospitals in the public and private sector. Surgical and Medical treatment is available in many tertiary care hospitals and medical colleges of our State. Cancer treatment is expensive and often may be beyond the reach of the common man. The State Government provides financial relief to people living below the poverty line in designated hospitals. Many other poor patients benefit from local MLA/MP/Chief Minister’s relief fund through appropriate recommendations. However on account of geographical and socio-economic reasons, in spite of these facilities and progress, large sections of the population remain deprived of cancer care. It’s a difficult task to reach far-flung rural and hilly areas of the State, which are still devoid of basic health facilities.