The primary treating physician, usually a specialist, should not be let off the hook. How he or she reacts to the need for good palliative care support for patients from the very beginning of treatment should define his/her professional competence. The need to continue to show an interest in and be involved with the care and welfare of patients who subsequently become terminal should also be part of the terms of engagement of doctors with their patients. More often than not, there is a tendency to cut off relations once this happens. This is terribly unfair for patients and families who would like to stay in touch with their specialists and continue to receive the benefit of their advice and experience.  Our experience has been that not only are specialists unwilling to work with the doctor on the palliative care team but are also prone to sometimes countermand medical orders and medicines that have been prescribed leaving the patient even more confused and distressed. Consequently, Our Home Care teams have learned to be doubly cautious if there is another doctor who is also being consulted.  In such circumstances, starting the use of an opioid like oral morphine for pain relief can become a tricky and vexing issue as the patients are inevitably told that oral morphine kills and is addictive. Once again, prejudice and ignorance score over the need to do what is in the best interest of the patient.

In the Indian situation, the need to “add life to days” and ensure a peaceful end is extremely compelling. Not only are patients referred to the palliative care team at the very end of life, when sometimes just a few days are left, but there are socio-economic factors that also need to be factored in.  Ensuring the continued survival and safety of members of the family left behind, especially if it is a young woman with children, once the main earner dies becomes a concern. They are the ones most likely to be exploited by neighbours and even members of their extended family if there is no male member around.  While female children may be pulled out of school to take care of younger siblings at home, the young widow, too, may have no option but to work long hours away from home leaving her children alone and vulnerable. To be able to address “total pain”, therefore, the rehabilitation of the family also becomes a necessary part of palliative care. It is what will add life to the final days of a dying patient who wants to be assured that his or her family will be safe and able to cope after he/she is gone.

In the west, the spiritual side of palliative care finds acknowledgement with the presence of a member of the clergy on the treating team. In India, this is generally left to the individual and family to sort out for themselves depending on their religious beliefs and preferences. However, it is often a time of spiritual crisis as people who may have faithfully followed religious practices begin to question their belief in an omnipotent God and ask the questions, “Why me God?” “What did I do to deserve this?”

For those on the team this is a time when they can only support the person with their presence as not only do they not have a balm to ease this spiritual pain, but this seems to be part and parcel of the process of dying which is not just a physical process. The mind and spirit too have to experience it so that the person can finally accept the end has come and let go in peace. There are many death-bed stories of the ineffable sunshine of the human spirit which shines through the darkest and most trying of circumstances rendering all else superficial and of little consequence. It is the reward that is given to those who have chosen the path of watching over others as they die; they are witness, however brief and fleeting, to the ultimate divinity of man.

“Where is the doctor?” is a question the CanSupport Home Care team is often asked when they walk into the home of a patient. The fact that the doctor may have a limited role to play in the prevailing circumstances, and is perhaps the least equipped of the team to deal with death and dying, is of limited consequence. It is a question of perceptions. In the eyes of the patient and the family the doctor has the ability to make things happen, much like a magician does, and therefore his or her presence helps keep unrealistic hopes alive.

These unrealistic expectations in turn burden doctors and deter them from dealing with patients and their families in an open and professional manner. Those facing them are not clients but rather devotees who need to believe that there is another hidden trick, yet to be revealed, up the doctor’s sleeve. This is the reason why doctors in India find it so difficult to break bad news and willingly agree not to tell when asked to do so. It also impels them to continue to suggest more diagnostic tests and further rounds of chemotherapy even when they know that the patient will not benefit. Their defense is that this is a cultural requirement and that it is better that the patient stay with them than fall in the hands of a quack. Oft times, however, there can be tragic and unintended consequences.

I would like to share here the story of a middle class patient who was dying in the hospital ward of a private cancer hospital and whose wife approached me one day for help. She had just been told by her brother-in-law that she should arrange to sell her house as her husband had been prescribed a new round of expensive chemotherapy.  The woman was distraught not only because her husband was seriously sick, she had two young daughters to support, and soon she would have no place to stay, but because she had no way of  independently verifying the status of her husband’s condition.  Every time she broached the subject with his treating doctor she was brushed off with the reply: “I have explained everything to your brother-in-law. He will explain it to you.”  Sensing her desperation, I offered to intercede with the doctor on her behalf.  When I asked him if he would give her time and answer her queries I was stunned by his reply: “I don’t discuss prognoses with women; they are liable to get hysterical.” It was of little concern to him that this woman may be out on the street tomorrow with her children because the brother-in-law was not yet ready to let go of his brother who, according to the treating doctor, had just a few more days to live.

I suspect that this is more than a cultural issue.  Doctors worldwide have a problem in admitting that their patients may be better off not pursuing pointless treatments. Thanks to the increasing commercialization of medicine, there is added pressure to prescribe more and more expensive tests and treatments and to finally admit the patient to the ICU where the hospital earns its highest revenues. Palliative hospice care is rarely mentioned and hardly gets a look in. Insurance companies, too, are less likely to cover it.

An Indian doctor resident in the US once wrote to me about the terrible treatment meted out to his 81 year old mother by a private hospital in Delhi. The header of his letter was “End of Life Issues Neglected in India”. His mother had been admitted with a stroke and a fracture of the spine but what followed during the three weeks she was hospitalized was sheer torture. She was seen and followed by two internists, a spine surgeon, a general surgeon, a cardiologist, a neurologist, a dermatologist and a gastroenterologist, in addition to an intensive care specialist and an anesthesiologist. Despite the fact that the family had requested no life support or intubation and had communicated this to the treating doctor their wishes were completely ignored. Their pleas to release her so that they could take her home and their enquiries regarding home-based palliative care also fell on deaf ears. All the doctor was willing to say was: “This is not done in India.”

What surprised me when I read this account was that our home-based palliative care team had just delivered a series of lectures for staff and caregivers at the same hospital. Why then were they not willing to acknowledge our existence when asked? Was it because, as the affected doctor in this case surmised, they were more interested in collecting the daily intensive care charges which they would otherwise lose? What puzzles me, moreover, is why the doctors were rude and unwilling to communicate with members of the family? Finally, as it turned out, the family was left with no option but to forcefully take their patient away after signing a form that stated that she was leaving against medical advice.

While it is true that it is only recently that the Supreme Court of India while listening to the Aruna Shanbaug case has ruled that someone who is put on a ventilator or on any other form of life support can be taken off provided certain stipulated conditions are met, this cannot become a substitute for end of life conversations aimed at ascertaining the wishes of the person who is dying and those of the family. Once again, training professionals and working in a collaborative manner with those in the field of palliative care who have a wealth of experience behind them is the way forward.           

In the 1970s, scientific studies undertaken in places like St. Christopher’s by Robert Twycross, MD, among others, began to establish the efficacy of narcotics such as oral morphine for sustained pain relief. As a result of this work, patients with intractable pain began to be administered morphine by mouth and by the clock in hospices and hospitals rather than the earlier unsatisfactory alcoholic and cocaine laced mixtures. The result was effective pain control with no fear of addiction or unpleasant side effects.
Subsequently, the WHO came out with an analgesic ladder to control pain in which it recommended that opioids such as oral morphine and codeine be combined with analgesics as one went up the pain ladder. Studies world wide have confirmed the efficacy and utility of this approach in providing pain relief and comfort without any harmful side effects.
Radiotherapy, chemotherapy and surgery were also given a place in palliative care, provided that the symptomatic benefits of treatment clearly outweighed the disadvantages and were focused on ensuring quality of life. Investigative procedures were to be kept to a minimum.
In 1993, in their introduction to the Oxford Textbook of Palliative Medicine, doctors Doyle, Hanks and MacDonald had defined palliative care as: “the study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is on the quality of life.” In 2000, the American Board of Hospice and Palliative Medicine defined it thus: “This discipline and model of care are devoted to achieve the best possible quality of life of the patient and family throughout the course of a life-threatening illness through the relief of suffering and the control of symptoms”.
Palliative care was no longer to be confined only to the final stages of a life threatening and progressive condition nor was it to be restricted to any particular disease, as it had till then to cancer. As the hospice movement spread there was also the recognition that there were cultural differences to contend with and that it could be delivered in a number of ways and in a variety of settings other than the traditional hospice.
Today, hospitals have palliative care consultancy services which are offered in their out-patient departments and clinics. Beds may often be kept aside for patients needing palliative support in hospital wards. Home visits by a team of trained professionals, who bring palliative care to the door step of patients and provide valuable back up and support to their families, is also a popular choice. Home is where most people would like to spend their final months and days; in familiar surroundings with their loved ones by their side. Day Care services, too, are playing a role in enhancing quality of life with patients from the local communitycoming in for a couple of hours to relax and enjoy themselves while giving their carers a well earned break. This is besides the free standing hospices that continue to provide palliative care, mainly acute and of a respite nature, in an inpatient setting.
There is no doubt that palliative care has come of age. Not only has the hospice movement spread to every continent on the globe, but palliative medicine is today offered in many countries as a medical specialty while palliative care has been accorded its rightful place as a sub-specialty of general medicine to be taught to all young doctors and nurses and those from the caring professions.

I am delighted to be able to share my views with you on this blog. I look forward to receiving your comments and views. Please feel free to express yourself but do remember that positive feedback always works best.

Warm regards,
Harmala.
………………………….
The Supportive Team:
When I was a child I was taught never to accept “nothing can be done” as an answer. According to my parents, there was always something that could be done provided one tried. I would like to add to this, from my perspective now as a tried and tested adult, provided one also has the necessary courage and imagination to do so.

The worth or curse of a gift of imagination was brought home to me with telling effect when I was diagnosed with cancer. I realized then that one of the things that stood between me and my ability to tide over this personal crisis was how I was able to view it. Almost immediately, after the initial shock wore off, my imagination went into over drive, pulling me in every direction from one moment to the next. So, while one moment I was walking on the edge of a cliff, the next I was on a tightrope over Niagara Falls, and soon after, somewhere in Russia with a gun held to my head. While each situation was different, they all had one thing in common – I was courting death and was terrified.

As I saw it, my greatest need was to rid my mind of these unpleasant images and replace them with more comforting ones. I could not do this on my own, I needed collaborators. Besides my family, friends and treating doctors who were in direct and regular contact with me, they included practically everyone else I saw or met. Even the stranger who smiled at me from across the street was part of my supporting team. But this support also had to have a fulcrum around which to fix itself; for me it was my faith in a universal loving presence. It stopped me from viewing myself as a victim, from blaming others for my condition or feeling that I deserved my disease.

It, therefore, saddens me when I hear from fellow survivors how extended family, friends, and oft times those on their treating teams, have handled them during the course of their long and traumatic encounter with cancer.  I have one such story to share with you.

I first meet Sumita through a mutual friend who went to great lengths to brief me about her before the actual meeting took place. From his concern it was obvious that she was a very special person and that I needed to know this.

When Sumita entered the room you forgot all about her emaciated body and her bald head, it was her personal warmth that enveloped you and held you firm. She was a young, single, working woman in her 30s with a great zest for life. However, it was obvious that she was in great emotional pain. As we talked I realised why. Her treating doctor, who she greatly respected, had just assigned one of his juniors to break the news of her spreading cancer to her. It had been done in the most brutal fashion possible. She was still reeling from shock.

Sumita had been diagnosed with cancer of the colorectal region almost two years before our meeting. She regretted the fact that it had initially taken doctors almost a year to correctly diagnose her. She had for several months been treated for piles. However, being the positive person she was, she had taken this in her stride and moved on. Subsequently, she had been operated upon and an opening had been made in her abdomen so as to bypass her rectum. A waste collection bag was attached there. This was followed by weeks of chemotherapy and radiotherapy. At the end of which she emerged even more determined to live life to the full.

A year later, during a regular check up, a recurrence of the cancer was detected. It had been caught early and Sumita was reassured that the new regimen of chemotherapy would take care of it. She had had no inkling that things were going badly for her until that fateful day when the news was broken to her. When I met her a week later, she was devastated. For the first time she had begun to lose hope. However, more than anything else, it was the cowardice of the doctor who had not had the courage to face her and the callousness of the doctor who had been assigned to break the news to her that was causing her the greatest anguish. Sumita was a generous, honest and trusting person; she felt gravely betrayed.

In the months that followed, Sumita proved that you cannot put a good woman down or suppress the will to live. With the help of her loving family, which comprised a widowed mother and three younger sisters, and a wide circle of friends, colleagues and admirers, Sumita began to fight back. The mutual friend, her boss, who had introduced me to her also continued to provide much needed emotional and practical support. This man, with the heart of a saint, lent her his car and driver whenever she needed to visit the hospital.

As Sumita was now in pain, her visits were generally to the pain clinic at the Institute Rotary Cancer Hospital at AIIMS where she was prescribed oral morphine. However, these visits began to take a toll on her for not only did she have to travel a long distance, but she had to sit for several hours on a hard wooden bench in the waiting area before being called in to see the doctor. For some one who was severely emaciated and suffered continually from nausea these visits became unbearable.

While Sumita relied on conventional medicine to control her pain, she had by no means given up on treatment options. I had the unique experience of accompanying her on a journey to a faith healer in Banswara, Rajasthan, a few months before her death. This was an extremely difficult journey for her body to undertake, but as they say, the spirit was willing. From the time Sumita and I, accompanied by a friend of hers and her parents, left the New Delhi railway station I was witness to her magic. There was not a soul in the compartment or along the way who did not want to help her in one way or the other. In fact, on our return, we were met halfway by a railway officer and his family who had prepared food for our onward journey. These were ordinary people who Sumita had befriended on our way to Banswara and who admired her courage.

Despite the long journey and her immense weakness, Sumita could not wait to visit the faith healer who she had been told could “suck out” tumours with his mouth. She had heard about him from another fellow survivor who had made this journey for the removal of a malignant tumour in her food pipe. She seemed to be doing better on her return. Unfortunately, when we met him, the faith healer was not willing to “operate” on Sumita. He wanted her to take tablets prepared by him and swallow them down with cow’s urine for a couple of weeks and then return to see him. Bitterly disappointed, Sumita decided to visit another faith healer in the vicinity who was also credited with wondrous cures. He used the blade of a sword, it was said, to remove the tumour and the amazing part was that there was not a scar to be seen at the point of contact!

That afternoon, we visited this healer and were part of a stream of people many of whom were camped in a nearby cowshed waiting their turn for a darshan. Sumita met the healer while we looked on.  He took great care to shield with his free hand the point of entry of the blade he held. Soon after, I heard a clicking sound reminiscent of the daggers with retractable blades that we used as children for school plays. But then, this was hardly of concern to those who like Sumita needed so desperately to believe in a miracle. I was the odd one out.

Sumita died a few weeks later after a valiant fight. She had been determined to prove the doctor who had said that she would live for only two months wrong. She succeeded. Sumita lived on for at least a year after that cruel verdict. Seeing Sumita’s anguish and suffering, I had discussed with her the need for a service for people with advanced cancer that would bring the care they needed to their doorstep.  She fully endorsed this suggestion and left a grant of Rs. 1 lakh to make this a reality. The mission of CanSupport, the cancer support organization I founded in 1996 and currently head, continues to share Sumita’s vision: that of a caring and supportive society where people with cancer and their families live with dignity, hope and comfort.