Palliative Care in Resource-Constrained Settings: Lessons Learned

CANSupport: Pioneering Home-Based Palliative Care in a Resource-Constrained Setting

Harmala Gupta

Harmala Gupta, Ph.D., was diagnosed with Hodgkin’s lymphoma approximately 16 years ago. At that time she was studying for her doctorate in political science at McGill University. After completing her treatment at the Princess Margaret Hospital in Toronto, Dr. Gupta returned with her family to New Delhi, India, in 1987. Three years later, she started the first peer-based cancer support group in India, called Cancer Sahyog. In 1996, Dr. Gupta started another cancer support group, CANSupport. Today, this program is well established and offers care to ­approximately 60 patients in their homes at any given time. It was the first home care program of its kind in New Delhi and continues to pioneer palliative care in North India.

India is a vast and diverse country with a population that officially crossed the 1 billion mark on May 11, 2000. The past couple of decades have seen a substantial growth of urban areas. Today, Delhi is the third largest metropolis in India, after Mumbai and Calcutta, and the city is growing rapidly. According to the 2001 census, the population of Delhi has passed 13 million. The National Capital Territory of Delhi mea­sures 1,483 square kilometers. The poor live in squatter settlements known as jhuggi-jhonpris, which are found all over the city and are home to about 25 percent of the present population of Delhi. Because those locales have no proper garbage collection, they are filthy and unhygienic. The CANSupport home care team members are frequent visitors to these areas.

Living Conditions in New Delhi, India

  • Twenty-five percent of the population of Delhi lives in squalor.
  • Delhi has no rapid mass transit system.
  • The number of cars and other vehicles on the roads has increased dramatically.
  • The increase in vehicles on the city’s roads has intensified traffic problems and contributed to a dangerously high level of air pollution.
  • Delhi squatter settlements have no garbage pickup or disposal system.

Most people cannot afford to buy property or pay the high rents common within Delhi’s urban center. However, most offices and businesses continue to be located in these areas. Consequently—and because of Delhi’s lack of a mass transit system—commuting has intensified and the number of vehicles on the road has increased phenomenally. In fact, current estimates are that the number of vehicles on Delhi roads is greater than that in Mumbai, Bangalore, and Chennai combined. The pollution levels within Delhi have increased with the traffic.

Medical care has steadily moved out of the reach of ordinary people. The All India Institute of Medical Sciences (AIIMS) is the only state-sponsored hospital and research and teaching center. It was established by an act of Parliament in 1956. A handful of government-sponsored hospitals are stretched to the breaking point. For example, the outpatient departments at AIIMS were built to serve a few thousand patients a year, but they are presently serving 1.8 million patients annually. Recent expansions in medical facilities have primarily occurred in the private sector. In the absence of health coverage from the state, most people cannot afford specialized medical treatments or prolonged hospitalization.

Why Is Home Care a Good Choice?

  • Patients are often unable to travel to a clinic for treatment.
  • The health care worker is available to the patient and the family.
  • Staying at home helps patients maintain already strong family ties.
  • Governments find the practice cost-effective.
  • Home care reduces the pressure on already overwhelmed medical facilities.

What are the implications of these circumstances for palliative care? According to official estimates, at any one time 2.5 million people have cancer in India; 180,000 new cases occur annually. Approximately 80 percent of patients present with late-stage disease. Yet, 80 percent of the funds under the Cancer Control Programme continue to be spent on treatment facilities. The remaining 20 percent goes toward cancer awareness programs and cancer detection facilities. Palliative care figures nowhere in the equation.

According to the Delhi cancer registry, approximately 6,500 cancer patients in Delhi need palliative care. Currently, only one palliative care clinic exists. It is run by anesthetists at the AIIMS cancer hospital. No more than one or two beds are reserved for patients who may require hospitalization. Those who seek care at government hospitals are routinely turned away. Of the two home care services, one is run by a private cancer hospital and one is a 40-bed hospice that, unfortunately, remains underutilized.

Oncologists at private hospitals prescribe expensive drugs and treatments for their patients right to the end. We estimate that approximately one-third of cancer patients are reduced to penury as a result of the prohibitive costs of treatment; most have no option but to suffer silently and die in pain. Because of outdated narcotics regulations, access to oral morphine is restricted. Unfortunately, even when such drugs are available, doctors are hesitant to use them because of their lack of experience and training.

Given a choice, most people would prefer to spend the last days of their lives at home surrounded by their loved ones and a lifetime of memories. In India, families are large and have strong ties. Almost 60 percent of the people we care for have families with more than five members. Family members are usually willing to nurse the patient. In our experience, when provided with appropriate instructions and medical support, they can become effective caregivers. They can change dressings, give nasogastric tube feedings, undertake colostomy and catheter care, and administer subcutaneous injections. They are able to carry out these tasks effectively, irrespective of their socioeconomic status or educational level.

Family involvement in care results in better physical care and brings family members closer together, and home-based palliative care makes good economic sense for everyone involved. Because most cancer patients in India exhaust practically all of their financial resources by the time they conclude their treatment options, they cannot afford the cost of further hospitalization. Palliative care is also cost-effective for the government, which, given its limited resources, finds it difficult to justify building in-house facilities for patients with terminal cancer. Moreover, home care reduces the pressure on overextended medical personnel.

CANSupport

In July 1997, CANSupport started a 3-month pilot project in collaboration with the Pain and Palliative Care Clinic at Institute Rotary Cancer Hospital (IRCH), which is managed by doctors from the Department of Anesthesiology at AIIMS. IRCH referred nine patients to CANSupport; they were cared for in their homes by a volunteer nurse and a volunteer counselor. At the end of 3 months, the results were encouraging enough for the project partners to launch a full-fledged domiciliary palliative care program that would provide patients and their families with high-quality medical, nursing, psychological, social, and spiritual ­support at home.

CANSupport: Quick Profile

Since July 1997, CANSupport has provided its palliative care service free to a total of 681 patients. CANSupport home care teams have made a total of 4,870 home visits.

  • Most patients who come for palliative care are in the terminal stage.
  • The mean duration of care per patient was 73 days (range: 1 to 475 days).
  • CanSupport made an average of 8 visits per patient (range: 1 to 48 visits).
  • The median age of our patients was 55 (range: 9 to 86 years).
  • Our home care teams have treated approximately an equal number of male and female patients.
  • During FY 2001–2002, the most common types of cancer among our patients were
    — lung (20 percent),
    — head and neck (20 percent), and
    — gynecological (18 percent).

In August 1998, following the recruitment of salaried staff, a nurse, and a counselor, CANSupport began caring for 20 patients within a radius of 25 kilometers of AIIMS. In November of the same year, the nurse and counselor were sent to the Pain and Palliative Care Centre in Calicut, Kerala, for training in palliative care. Although private vehicles and taxis were initially used for home visits, a start-up grant from the Tudor Trust enabled CANSupport to buy its first vehicle in May 1999. Around the same time, a doctor joined the staff. Approximately 40 patients were being cared for at that time. By June 2000, a second nurse and a ­doctor were added, making it possible to form a second team. Rotary International donated a second vehicle for transporting the team, and the Sir Dorabji Tata Trust in Mumbai contributed to the operating costs of the home care project. Today, the home care teams visit and care for approximately 60 patients.

The CANSupport home care program has faced a number of challenges:

Other obstacles that health care professionals encounter in setting up a palliative care program include

In growing, CANSupport has capitalized on its strengths, which include a committed group of volunteers who are willing and able to provide support to the program in the form of administration, fundraising, and advice. CANSupport’s founder (the author of this chapter) is a cancer survivor with training in counseling and work experience as a cancer support person in IRCH/AIIMS. In addition, a nurse from the United Kingdom, who had been involved in setting up a home-based hospice in Kenya, was in Delhi and was ­willing to commit her time and share her expertise to get the home care program off the ground. The head of the IRCH Pain and Palliative Care Clinic, the CEO of the IRCH, and the Director of AIIMS all were ­willing, notwithstanding the overriding lack of interest in palliative care among health professionals, to partner with a nongovernmental organization. In addition, Sr. Agnes, a nun with the medical mission sisters who run several hospitals in India and who has extensive training in palliative care counseling both at home and in the United States, was willing to join our team. Also critical to our success has been patients’ access, through IRCH, to oral morphine. Finally—and most important—patients’ families have been willing to devote time to the care of their loved ones and to learn to do so more effectively.

How the Home Care Service Works

The Pain and Palliative Care Clinic at IRCH provides outpatient services two afternoons each week in liaison with the CANSupport home care team. Patients who require home care and live within 25 kilometers of IRCH are referred to CANSupport. The management of these patients is reviewed weekly during team meetings at the office and biweekly with the physicians of the Pain and Palliative Care Clinic. Although most patients come to the home care program through IRCH, the service is becoming better known and self-­referrals are increasing.

The CANSupport home care team routinely visits each patient at least once a week (Monday through Friday, 10 a.m. to 5 p.m.); the team visits more frequently if the team members feel that the patient requires additional care and reassurance. Patients are given the mobile telephone numbers of the team members as well as their home telephone numbers, allowing them to stay in touch with team members 7 days a week, even outside office hours.

If a patient has been prescribed morphine, a visit is usually made after 2 days. The doctor will assess the patient’s response to the medication, adjust the dose if necessary, and prescribe treatments for any side effects. Issues pertaining to morphine also need to be discussed and clarified with the patient and the ­family: It is important for the patient and the family to understand that they must follow the dosing schedule.

The first visit provides an opportunity for the nurse and the counselor to make a joint assessment of the needs of the patient and the family and to plan for subsequent visits. For example, if it is obvious that the family is in emotional distress, the counselor will continue to be part of the team for subsequent visits. The team nurse is the key member and always plays an active role in providing care. Her role is to teach the family how to carry out nursing tasks between visits and to address issues pertaining to diet. Every member of the team is there to listen to patients and their families, to reassure them, and to make them feel more in control.

Challenges We Expect to Face at CANSupport

  • Expanding the area and numbers of those using the home care program
  • Setting up a recognized palliative care training center
  • Obtaining a license for oral morphine
  • Motivating more volunteers to join our team
  • Acquiring financial stability
  • Getting palliative care for cancer on the government’s health agenda
  • Using the media to spread the message of palliative care
  • Building a strong palliative care network among medical caregivers in Delhi.

On average, each team visits five or six patients per day. To reduce travel time, the teams concentrate on a particular part of the city. Even so, the team travels as much as 80 to 100 kilometers on some days. The duration of visits is flexible, but they usually last 45 minutes to an hour. During each visit, the patient’s general medical condition and medicines are reviewed, as are his or her nursing and psychological needs. An effort is made to involve the primary caregivers in all decisions relating to future management of the patient. The team members work to build good rapport with the patient and family members by honestly answering all of their questions. This approach helps both the patient and his or her family open up to the team members and share their hopes and concerns. As a result, family members are better able to comply with instructions and cope with what is to come.

After a patient dies, the CANSupport home care team makes a bereavement visit. Leftover medicines and medical equipment are returned to the team for use by other patients. The team specifically asks for the return of the leftover morphine tablets, which are returned to the IRCH pharmacy. At the end of the ­bereavement visit, the team invites the members of the grieving family to take advantage of bereavement counseling, should they need it. The team will also invite the family to attend CANSupport’s annual Remembrance Day, during which families and members of the home care team come together and light candles in memory of those who have died. Occasionally, a family will make a financial donation to the program.

CANSupport: Lessons Learned

  • Aligning with a recognized and respected medical institution can be advantageous.
  • Keeping funding sources independent of government restrictions is critical.
  • Programs can remain flexible and agile by staying small and not being tied down by a large infrastructure.
  • Investing in a detailed strategic planning exercise to reevaluate goals and focus on a future direction is worthwhile.
  • Programs should not be afraid to beg for funds.

Socioeconomic factors largely govern health care delivery in developing countries like India. Social Security or other support programs to provide medical care to impoverished patients do not exist. We have observed that fewer than half of our patient families belong to the socioeconomic middle class, which would give them the resources to buy analgesics and other drugs, but not the resources necessary for a prolonged hospitalization. The other half of our patients are poor and cannot buy even inexpensive analgesics. Many were starving when they entered care and had to be provided not only with all medicines but also with food rations. In 9 percent of the families, the patient was the sole income-earning member. Moreover, 50 percent of the families had only one remaining working member to support the family and provide for the needs of the patient. In the absence of a social support system, it becomes increasingly difficult for one earning family member to provide optimal patient care, buy medicines, and look after the family needs. This often leads to the exhaustion of family savings with subsequent debt. For these reasons, CANSupport is committed to providing free home care service as well as free medicines, nutritional supplements, and food rations to patients who need them.

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