A journey from cancer to 'CanSupport'
When I was diagnosed with Hodgkin's disease, I never imagined how my life was about to change. I was enrolled in a Ph.D. programme at McGill University in Montreal, Canada, I had a three year old son to raise and suddenly, in the summer of 1986, I was fighting for my life from a hospital bed.
I am not sure whether the little I knew about cancer when I was diagnosed with it was a good thing or a bad thing. I certainly knew that cancer kills and that it is the most dreaded of diseases, but little more. I remember being informed by my doctor that I had Hodgkin's disease and wondering if it was a cousin of Parkinson's - they both had very distinguished sounding names! The word 'cancer' to describe my condition was first used by a visitor. I still remember the callous way he flung it in my face, which reinforces what all the experts on communication say; the important thing is not whether you should tell but rather how you should tell. I would have preferred to have heard the word first used by my doctor. My doctor did subsequently say the word, and I am grateful for the conversation that followed because the good news is that today there is a great deal that can be done to treat cancer even if it cannot be fully cured. But when the diagnosis is first made, it is cure that matters. It was no different for me.
I was fortunate to have been treated at a facility held in high esteem around the world - the Princess Margaret Hospital (PMH) in Toronto, Canada. The staff were considerate and compassionate and the surroundings were beautiful. I was particularly impressed by the constant effort made to cut down on patient waiting time at this very busy institute. The volunteers drove us in, helped transport our files to the right clinic, offered services such as tea and coffee, provided excellent back up, and fostered a sense of normalcy. I remember walking into the wig boutique one morning to be fitted before I actually lost my hair to my chemotherapy treatments. I was greeted by two lovely old ladies, one of whom was a little hard of hearing and thought I was asking for a "blonde" wig when what I actually asked for was a "long" wig. The ensuing conversation was a comedy of errors with my confusion and bewilderment growing when she said things like: "My dear, that will not suit you at all." "It will not go with your colouring". Having a wig to deal with hair loss is such a necessity, especially at the beginning, and I was delighted that PMH had such a service available. Later on, dispensing with the wig marked a new stage in my journey towards acceptance. Considering the fact that a great many of the youngsters on the streets of Toronto those days had shaven heads, I did not really feel out of place. I called this latest fad "the cancer look".
Humour is a great companion when spirits flag and the body droops. I rather enjoyed the black edge that mine acquired. To the oft asked question, "What are you doing these days?" I usually retorted, "Living dangerously!" That invited the inevitable next question and the startled looks when I used the word 'cancer'never failed to amuse me. It is difficult to convey to an outsider the exhaustion and exhilaration, some times in quick succession, that accompany this ding-dong battle. Every time I said "No!" to cancer I felt a rush of blood to my head - much like the satisfaction of spurning the advances of an unwelcome and persistent suitor! Naturally I could not share these thoughts and vivid images with everybody. My family had enough going on to keep them busy, and this would have been one more thing with which to deal.
This is where support groups based on survivorship, play such an important role in providing an outlet for repressed emotions and feelings. More than anything, I needed to meet with people who had been treated for Hodgkin's, were now well and could empathize with what I was experiencing. They, more than anyone else, could understand the craziness that lurks beneath the surface and the anger that threatens to erupt at the smallest instigation. It was reassuring to know that I was not as mad or as bad as I thought, and that others had been there before me. What I was feeling was natural and to be expected. I discovered that I had to stop judging myself. It was not my fault I had cancer - though there are self-help books that almost suggest that I was to blame for what had happened to me. Instead, I now had an opportunity to contemplate who I was, where I was and where I wanted to be.
For me, there was no question of where I wanted to be and what I wanted to do. I wanted to return to India and start a support group for people like me - people living with cancer - based on the concept of peer support that I had witnessed in Canada. As a survivor, I felt I had an invaluable role to play - a role that would also help my healing process and bring meaning to my illness.
Returning home to New Delhi was a real eye opener. It was as if I had been living on a different planet, but was back in the real world where people did not announce that they were survivors of cancer, where elaborate steps were taken to conceal the truth by doctors and relatives alike. "Cancer kills!" was the unspoken scream. Therefore, the real challenge was to get cancer out of the closet and to convince doctors that the intention was not to frighten their patients or to interfere with their treatments. It was a slow but inevitable process. 'Cancer Sahyog', the support group I started ten years ago with a group of like-minded people, (under the auspices of the Delhi branch of the Indian Cancer Society (ICS)), has come a long way. It has a presence in most cancer treating hospitals in Delhi today, and at last count, there were more than twenty similar support groups in different parts of India. Their number is rising fast, and since last year, an umbrella organization has been formed for all such groups in the country. It is called 'Cancer Care India', and I am proud to be one of the founders together with Mr. P.K. Ghosh who is the secretary general and the prime mover. But now I need to retrace my steps.
Gathering a small band of volunteers who had been personally affected by cancer was no mean task. The initial group comprised a pathologist who had recently returned from the USA, four cancer survivors, one caregiver who had lost her child to cancer, and a naval wife who was also the head of the 'Ladies Committee' of the ICS. These people, all women, were already involved in raising cancer awareness. Subsequently, volunteers joined us through word of mouth and personal contact. The group was in constant flux and we never knew who would attend the next meeting.
By 1 August, 1991, the group had stabilized and we began to visit the breast cancer clinic run by the surgeons at the All India Institute of Medical Sciences (AIIMS). We were volunteers equipped with basic training in listening techniques, we had our own personal experiences with cancer to guide us and we had literature adapted and translated to meet our requirements. The needs we met ranged from external breast prostheses to sickness bags to curtains for the examination areas and, of course, help to meet the mounting cost of cancer treatment. This was a time of learning for each one of us.
Cancer is a disease best fought by those who have the finances for it! Even though patients did not have to pay exorbitant amounts for tests and doctors' fees at AIIMS because it is a government sponsored facility, the cost of the medicines was generally beyond the reach of the common man. I could not help contrasting this situation with the excellent medical treatment I received at PMH without worrying about medical expenses as I was covered by insurance. What I found even harder to accept was that patients often had to spend their scarce and dwindling resources on expensive second and third lines of chemotherapy even when it was clear they had end stage disease. Thus was born 'CanSupport'.
I am not sure I could have started a hospice programme any sooner than ten years after my initial tryst with cancer. I finally felt secure enough to face the fact that cancer can come back. For the majority of Indian patients it never quite goes away as they present initially with advanced disease. The personal experience I had with two close friends of mine around this time also brought home the realization that when treatments fail and money runs out, you are left to fend for yourself. No oncologist wants to spend his precious time, and no institution its scarce resources, on a patient who is not going to get well and has no money for further treatment. In a situation of scarcity there are priorities, but being at close quarters and watching two young women die horrible deaths, I was sure there was another way. The idea of providing ongoing care to these patients and their families began to form, but the question was : How to proceed? The answer presented itself in a chance meeting with Ruth Wooldridge, a nurse from the U.K. who had started a similar hospice project in Kenya where her husband Mike had been posted as a BBC correspondent. There was no question in my mind that home care was the route to take, and I found a soul mate in Ruth.
In April 1996 we approached Dr. P.K. Dave, then director of AIIMS and proposed starting a pilot project to care for six patients with terminal cancer in their homes. He was open to the idea as was Dr. V. Kochupillai, the chief of the Institute Rotary Cancer Hospital (IRCH). The seeds of the CanSupport home care project were thus laid. With Ruth at the wheel of her car and I sitting beside her playing navigator, we began to visit the homes of patients who had been referred to us by Dr. Abha Saxena who ran the Pain & Palliative Care Clinic at IRCH. Our only condition was that patients must live within a 25 kilometers radius of AIIMS, which covered a wide area. The patients were primarily lower middle class or poor and many lived in congested localities with choked sewers. This did not matter - the warmth of the welcome we received from the families more than made up for any difficulties. Our visits were an opportunity for us to observe the willingness of the caregivers to put themselves out for their loved ones. It was a humbling experience and we felt privileged to be part of the lives of these wonderful people. They in turn were grateful for our weekly visits and for every little thing we did. Often it was no more than holding a hand and listening to their life stories. On most visits Ruth concentrated on making the patient feel at ease and showed the family how to meet nursing needs such as mouth care and the dressing of wounds, while I attempted to explore the psycho - social issues of members of the family. In most cases, families were visibly strengthened and empowered by our support and no longer had to panic and make mad dashes to the nearest emergency facility or private practitioner to be turned back disappointed.
Since that small beginning we have had a steady progression of patients from IRCH as well as from cancer hospitals around the city - despite the fact that many treating doctors are reluctant to lose control of their patients, even when the end is near.
CanSupport's growth owes a great deal to the calibre of its team - doctors, nurses and counsellors - who believe in their calling to bring comfort and high quality care to the doorsteps of patients and their families. Their willingness to work as a team and to witness, day in and day out, the pain in the homes they visit is a tribute to their high standards of professionalism, personal maturity and commitment. Today, CanSupport has three teams comprising three doctors, three nurses, a nursing assistant, two counselors and three drivers. They look after 85-90 patients at any one time, covering long distances in the extremes of heat and cold that characterise the climate of Northern India.
They are well supported by the administrative manager and the accountant who run the office as well as by the growing band of active and committed volunteers, (approximately 30 at last count), who are responsible for organizing fundraisers and events, helping with administrative tasks, managing the daycare, preparing and serving meals and ferrying patients back and forth.
Patients are visited by the CanSupport home care teams at least once a week, and more frequently if they require more care. Patients are given the mobile phone numbers of the team as well as their home telephone numbers and can reach them at any time.
If oral morphine has been prescribed and the patient would like to be followed up at home, the team usually makes the first home visit a day or two following the referral. Then the patient's response to the morphine can be assessed, the dose adjusted if necessary or medications prescribed for any side effects. Often issues pertaining to morphine need to be discussed and clarified with the patient and the family. This is also an opportunity to make a preliminary assessment of the needs of the patient and the family and to plan accordingly. If there is significant emotional distress, the counselor will continue to be part of the team for the next few visits. The team nurse plays an active role in providing nursing interventions, such as putting in a catheter, dressing a wound, doing a digital rectal evacuation and teaching the family how to provide effective nursing care. The doctor is there to answer medical queries and prescribe and adjust medications. Besides these specific tasks, every member on the team is available to listen to patients and their families, to support them and to make them feel more in control. Good communication and empathy are the hallmark of any palliative care team, as is attention to the various needs of the family. Providing drugs and equipment, clothes and food rations are all ways of showing we are listening.
On an average day each team visits five to six patients. To reduce traveling time, each team concentrates on visiting the patients who live in a particular region of the city - north, south, east or west. Despite this, there are days when a team may travel more than 100 kilometres. The duration of each visit is flexible, usually 45 minutes to an hour. At each visit, the patient's general medical condition, medicines, and nursing needs are reviewed. The intention is to provide a back up to the primary care givers who are responsible for the patient's ongoing nursing care. The team members endeavor to build a good rapport with the patient and the family members by answering their queries honestly and discussing the future course of management and what they should expect. This approach helps the patient and the family members to be open with the team and discuss their anxieties and doubts. When they are provided with adequate information and direction, families are better able to cope with what is to follow.
Shortly after the death of a patient under their care, members of the CanSupport home care team make a bereavement visit and offer the possibility of bereavement counseling to members of the family should they feel the need for it in the future. Families are invited to an annual remembrance day ceremony organised by Can Support in the month of October. This provides an opportunity for further interaction and for closure for the members of the team.
We at Can Support are mindful of the fact that burn out is a recognized phenomenon in the kind of work our home care teams do. This is the reason we insist that team members work in groups so that after each visit they can talk and ventilate as they travel to the next home. Team members are also encouraged to take time off. Planning meetings are held twice a week and in-house teaching sessions also provide opportunities to debrief and discuss cases. The counsellors on the team are available to help staff work through difficult emotions. Team members present their work at the Annual IRCH-Can Support Foundation Course in Palliative Care and they also participate in national and internationals conferences. These activities bolster personal self esteem, reinforce the team spirit and give a sense of professional worth.
Initially, Can Support was lodged in two rented rooms, but it now has a small facility provided a year ago by the Municipal Corporation of Delhi. It serves as a base for the home care team and it also provides room for the daycare programme we started on 1 August 2003. On Mondays, children being treated for cancer at IRCH come in with their parents and enjoy the morning playing and participating in art and craft activities under the watchful eyes of our volunteers and a trained teacher. This time is also used to talk with the accompanying parents and help them share fears, anxieties and information with one other and with our empathetic volunteers. Parents often express feelings of guilt, talk about their inability to afford treatments, and ask questions about diet and hygiene. We do not pretend to have any magic solutions, but we believe that providing an environment conducive to articulating such concerns is therapeutic in itself. Material help, clothes, medicines, equipment, etc, is given to those most in need. All our services are provided free of cost and that is always a welcome reprieve for a population bowed down by the burden of costly treatments.
Fridays are reserved for our home care patients. Members of the team bring them to the daycare centre in our vehicles. A doctor and nurse are present and volunteers provide companionship and hospitality. Patients are offered hand and foot massage and therapies such as aromatherapy, and acupressure by our trained volunteers.
CanSupport invites people with cancer along with their family and friends to a "drop-in" meeting on the first Wednesday of the month. The number of people at these meetings is steadily growing and there is a demand for more frequent meetings. There is generally a doctor present to answer medical queries and offer reassurance.
CanSupport is committed to sharing its pioneering experience in the field of home-based palliative care with the larger medical care giving community. Since 2001, we have held a foundation course in palliative care jointly with IRCH. We are extremely grateful to Dr. Sushma Bhatnagar, the current head of the Pain & Palliative Care Clinic, and to her team for their unstinting support and encouragement that have raised our confidence and made our link with IRCH such a special one. The fact that IRCH has a license for oral morphine is a great help for our patients as CanSupport has yet to secure a license for itself.
After eight years of experience, we at CanSupport believe that the way forward is to train other professionals, and to set up satellite centres in different parts of Delhi and its neighbouring areas. We will be able to reach out to more patients in need of care and we will be able to limit the time the home care teams spend on the road. It is an exciting time for us as we plan the opening of these new centres. Fortunately, there are donors willing to finance our efforts. We hope that this expansion will remove some of the barriers that currently keep palliative care from reaching those who need it most.