Indian Journal of Best Supportive Care
October 2012

Diagnosis, Prognosis and Protocols—The Triple Assault
by Dr AK Dewan

Oncologists regularly devastate their patients by launching a triple assault of diagnosis, prognosis and protocol. Young doctors interpret the results of tests and simply convey the diagnosis as "stage IV lung cancer with poor prognosis." Many oncologists even give chemotherapy protocols to the patients and hand over leaflets of product information. That is great reading to be handed over to a patient when he has just been told that he has cancer! The patient tries reading a chemotherapy protocol which talks of the product pharmacology, how it is administered and its side effects. There is not a single word in it suggesting that it will help-it gives only destructive information. No wonder the patient might feel he would rather die a quick death than submit to the tortures described in these documents. However, there are brave souls who submit themselves to suffer from virtually every one of the possible side effects.

Unfortunately, when doctors look at their patients, some see only the disease in them. Many of them need to be reminded that there is a human being in the room. The patient is not just a disease like non-Hodgkin lymphoma (NHL) or sarcoma or squamous cell carcinoma of the lung, but a person. A medical college teaches everything we need to know about writing prescriptions but nothing about understanding people.

Doctors note down the facts of a patient's medical history without paying much attention to the patient, but we must never forget the look on the his face, the tremble in his hand, the falter in his speech, the dropping eyelids and the hidden signs of what troubles him. Much of the communication between doctor and patient is non verbal. Many times when we see patients from other states or countries, and there is a language barrier, we show our concern through non verbal forms of communication.

It is well accepted that the practice of medicine has changed drastically by advances in the doctor's ability to both diagnose and treat disease. Unquestionably the curative powers of the physician are vastly greater than ever before. But our power to heal people and their lives seems to have diminished. The patient is repaired but not healed and he is not a better person than he was before.

Every doctor thinks of cure as healing power. Every patient they lose represents a profound failure and curing becomes an addiction. Since all doctors are bound to lose some of their patients, they develop a sense of failure as the tally of losses rises. Is medicine not a failure oriented profession where we measure our success not only via cure rates, but also via morbidity and mortality? It is because we emphasize the disease rather than people.

Let us cure the disease and care for the person. Let us understand the human angle of the disease. Disease is more than just a clinical entity. It is an experience and a metaphor with a message that should be listened to. We should be willing to treat more than a disease by supporting our patients emotionally and loving them in addition to caring for their physical ailment. We may be able to redirect their lives, not just treat their illness.

A few years back I received a letter of thanks from a patient's child, "I am indebted to you for providing my Mataji with the most effective medicine-sincere care, positive attitude and concern. God bless you and thank you for your kindness, concern and above all for being my mother's friend."

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Cancer as a Socio-economic Disease in India
by Dr Pallavi Purwar

Cancer survival is known to vary according to the socio-economic circumstances of the patient. With cancer patients in India, one sees this in reality every day. Cancer, for patients in India who are poor, have no health insurance, or have small-time jobs and support large families, means a death knell. Even if patients' cancer is diagnosed in the curative stages, the cost of treatment, surgery and follow-up regimen makes it impossible for poor patients to pursue any meaningful treatment. Surgeons and doctors who deal with cancer patients in government-run hospitals in India see this much too often during their work.

As a surgeon, I have been dealing with cancer patients for the past six and a half years. Especially during my stint with the PGI Hospital in Chandigarh, we dealt predominantly with abdominal malignancy patients. Many patients there used to be in end stage disease and because of the heavy patient load, we could not offer to give our patients supportive care. I remember distinctly a patient who had carcinoma of the oesophagus and who we had operated upon in advanced disease after giving him chemotherapy. The patient went home and came to us nine months later with a bleeding tracheo-oesophageal fistula. We could do nothing for the patient. With all our intensive care and general beds full, and with more patients waiting for admission, the patient died on a trolley in our emergency OPD as we looked for ways to accommodate him. That was the day I resolved that I should devote some of my time to support terminally ill cancer patients. There are times when as a doctor, I feel as helpless as the patients and their families. We don't know whether it is the monetary constraints, social structure, lack of adequate medical facilities or our style of work that contributes to such a situation. However, I feel that if each doctor goes out of his way a bit, cancer patients will get better attention. The worst plight for any surgeon is not being able to attend to the patients who they have themselves operated upon. This is where it becomes difficult to make a decision. On the one hand, a surgeon has a terminally ill patient for whom nothing much can be done insofar as a cure is concerned, and on the other hand one feels drawn to the patient as one has been treating him for so long and one gets attached to him emotionally.

We see cancer patients largely in the late stages of the disease, when at least half of them are beyond the stage of cure. Although today there are claims that with effective chemotherapy and advances in surgical expertise, cancer is now a chronic disease, more like diabetes or hypertension, but this is far from being true for Indian cancer patients, especially those who are economically disadvantaged. We not only get more patients in more advanced stages of disease but many of them can't afford the cost of therapy either.

One of our patients had a tumour in his leg. He was in stage three of the disease when he first came to us. The patient was the sole earning member of the family. His wife was unlettered. They had three children aged two, five, and eleven. His parents were also dependant on him. He had a dwelling in Gurgaon near Delhi and no other assets. We wondered what it was that we could do for him, given his socio-economic situation. Chemotherapy he couldn't afford and if we were to cut off his limb which had the tumour, he would have been crippled and would have lost his job. The patient opted for no therapy. His mother cried on my shoulder and told me that he has decided to earn money for his family for as long as he may live with the disease. Six months later, I was operating in the emergency when he took his last breath due to diffuse lung involvement. If we do a careful analysis of our patients, half of our advanced malignancy patients would be those who electively chose no treatment due to financial constraints.

Cancer in India is more of a social problem than a medical one, and these problems are not confined to those who cannot afford treatment. Some patients spend a fortune on treatment at the best of cancer hospitals and still face a multitude of problems. One of our patients had breast cancer and had come to us in the early stage of the disease. She was a lawyer who had taken multiple opinions both in India as well as in the US before coming for surgery. She insisted on breast conserving surgery despite having poor volume of breast tissue and then had to undergo surgery thrice in an effort to get negative margins. She ultimately had to undergo a mastectomy. She later on did not respond to first line chemotherapy and was hormone receptor negative. She developed brain metastasis during chemotherapy. She was started on Herceptin on a weekly basis which is a very expensive treatment, and later underwent metastasectomy of the brain metastasis. The patient expired before completion of the therapy. The attendants later believed that the patient's life span during her treatment was probably the worst phase of her life and that she could have died peacefully off treatment! We will never be able to tell what would have been better for the patient.

Just as there is sad news, we also have patients who respond well to treatment. Surgeons and doctors are not all-knowing. Nobody can predict the outcome of therapy for any individual. But this is what the patients expect us to know. We can talk of possibilities on the basis of response in other patients and trends across the globe, but for a parent or a spouse or a son or a daughter, their loved one is the most precious life in the world and they don't care about statistics.

Another problem in management of cancer patients are the side effects of therapy which probably drive patients towards abandoning therapy midway. Cachexia, nausea, vomiting, hair loss, disfigurement due to surgery: any or all of these play a role in deciding whether the patient will continue with the treatment or not.

Dr Pallavi is MS, and DNB, General Surgery. She wish to become a social surgeon who is available to patients who don't have access to healthcare.

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Cervix Cancer Needs Extra Care in Advanced Stages
by Dr Rupali Dewan, MD

Cervix cancer patients are generally a disadvantaged group in India: economically they are poor, while being women and mostly elderly makes their position even more precarious. Giving the patient relief from pain, maintaining good nutrition, and keeping the patient clean and dry are important factors in palliative care for cervical cancer patients.

Forty-five-year old Bimla Devi lived in Rishikesh and suffered from cervical cancer. Her final months were most painful and distressing for her. Foul-smelling discharge, diarrhoea, incontinence, unbearable pain-her life and death were as difficult as they could get for a female cancer patient. Her estranged family put her in a corner of her house, wishing they could get rid of her. Bimla Devi was just one of the estimated seventy thousand women who die of cervical cancer in India every year, the commonest cancer killer among Indian women.

As a gynaecologist working in a premiere state-run hospital in Delhi, I see hundreds of cervical cancer patients every month. Women around or over the age of the fifty are the ones most affected by this female reproductive organ cancer, which is incidentally simple to detect through an inexpensive pap smear test. Yet, many patients arrive at a hospital or go to a doctor only when the disease has already reached a non-curable stage. Patients, especially those who are economically disadvantaged, have to continue to go to hospitals for relief. In hospitals which are already under stress due to a high patient load, gynaecologists or oncologists generally refer patients for palliative radiotherapy to give symptomatic relief from pain or other irritating symptoms like dribbling of urine, whereas the patient actually needs extensive gynaecological care at home and in the hospital in order to live with minimum discomfort as the cancer progresses.

In India, to be a woman belonging to the poor strata of society and to be suffering from cervix cancer is one of the hardest things to endure. The living spaces are small, there is no palliative medical care at hand, and the families are ill-equipped to understand cervical cancer and ways of dealing with it in the advanced stages. The commonest complaint a cervix cancer patient has is foul-smelling vaginal discharge, which can be for instance, a combination of blood, pus, stool, urine and tissues. Keeping the patient clean, dry and odour-free becomes a challenge. In poor households where space is cramped, the shared room or toilets start to smell fetid and it becomes impossible for the family to stay near the patient. The mental and emotional stress that the patient suffers is unimaginable. If a fistula develops in the vaginal region or around it, then the urine and stool elimination passages sometimes connect and the urine and stool are excreted, mixed with each other, or the urine dribbles continually. Availability of dry clothes and adult diapers is very important in such a situation.

Not only does the patient need to be kept clean, she also needs to be moved gently in the bed so that bed sores don't develop. Weak, under-weight, emaciated patients have to often lie in their own discharge, unturned on the bed, compounding their physical pain. Pain in the lower abdomen, the limbs and burning sensations during urination are also very common complaints. Even though pain relief is paramount in palliative care, pain relief medicines, especially opioids, are not so easy to come by in India.

More often than not, death in cervical cancer patients is known to be caused by renal failure. When the tumour inside increases in size, the tubes from the kidneys that bring urine to the bladder are pressed, thereby blocking the outflow of the urine. The kidney function becomes impaired as a result, with the feet swelling up, blood in the urine and other symptoms. Renal failure can cause death if the condition is left untreated.

Not only does the patient have to suffer great misery physically, but the family, especially the husband, if not supportive, can make life harrowing for the woman. I have seen husbands abandoning their wives or leaving them unattended with the messy and painful advanced cervical cancer. When a female cancer patient needs her family's care the most, she is usually least cared for, at least in poorer families.

The author is a senior gynaecologist at the Safdarjung Hospital, Delhi, and has a special interest in palliative care.

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When Cancer Recurs...
by Dr AK Dewan

When cancer recurs, patients and their relations do medical shopping from doctor to doctor in the vain hope of hearing that this was a wrong diagnosis. They may seek help and reassurance from fortune-tellers and faith healers. They may arrange for expensive trips to famous clinics and physicians and only gradually face up to the reality which may change their lives.

Relations play a significant role during the time of illness and their reactions contribute a lot to the patient's response to his/her illness. Recurrent illness may bring about significant changes in a household which the wife has to get used to. She may feel threatened by insecurity and loss of dependence on her husband. She may have to do many things which her husband used to do, e.g., manage business and financial matters, etc. There may be a total reversal of roles and even children may add more responsibility on the mother -she may feel that she is a lone parent.

Family needs keep changing from the onset of the illness and continue to take many different forms until after the death of the patient. Family members should use their energy economically and not exert themselves to a point that they collapse when they are most needed. An understanding helper or relation or even a cancer care volunteer can contribute a lot in helping the family to maintain a sound balance between serving the patient and respecting his/her own needs.

It is very common to see relations who don't want to communicate the seriousness of the disease to the patient. When the dying patient's problems eventually come to an end, the family's problems often go on. Many of these problems could have been decreased by discussing them before the death of the patient. Unfortunately relations tend to hide the facts as well as their feelings. They try to keep smiling faces as if things will be ok soon. The majority of terminally ill cancer patients know that they have a short time to live but loved ones often say, "Don't tell my spouse, he/she will not be able to take it." The patient will respond in the same way. Both of them know the facts but neither have the courage to share it with the other and this sometimes after even forty years of marriage. Emotional support groups and palliative care workers can encourage the families to share their feelings. Both can be relieved without playing deceitful games. I think the dying can really help their relations if they communicate freely in terminal phase. Relations will then remember their love one's strength and bear their own sorrow with more dignity.

People are reluctant to talk freely about death or dying. Communication may be difficult the first time but becomes simpler with gained experience in meaningful communication. This can bring a closeness and understanding between family members.

We have seen many old men and women, however, who have become disabled physically and emotionally, and who required a tremendous sum of money for a dignified maintenance of a level their family desires for them. The family is then often confronted with a difficult decision, namely, to mobilize all available money including loans and savings for their own retirement, in order to afford such final care. The tragedy of these old people is perhaps that the amount of money and often financial sacrifice does not involve any improvement of the condition but is a mere maintenance at a minimal level of existence. If medical complications occur, the expenses are manifold and the family often wishes for a quick and painless death, but rarely expresses that wish openly. That such wishes bring about feelings of guilt is obvious.
Patients in their terminal days may become non-communicative (due to neurological deficit). As doctors and care givers, we should never classify anybody as vegetative just because he cannot react to external stimuli. We should continue to give respect to the patient in all forms of communication.

Many relations insist on hospital admission and care in a high dependency area of the hospital where they are not allowed to go except for two visits a day lasting half an hour or so. They keep grumbling and being angry at the nurses for being so cruel so as to allow them only a few minutes with a patient who has little time to live. I might well ask the relations/spouse of the patient, "Was that the way to say goodbye to your relation with whom you have spent forty years?" Is it not wiser to care for such patients at home or in a hospice where spouses/relatives can spend the maximum amount of time with their loved one? Home care teams can guide relations and give emotional support to patients. In hospice, arrangements can be made for relatives to stay with the patient. Relations can sit, rest and eat together, when they can share their loneliness and perhaps console each other during the endless period of waiting.

Social workers and spiritual advisors can be available to patients and relations to address social and spiritual issues in terminal phases. Once the relations are made aware of the problem, prognosis and outcome, they can give emotional support to the patient and generally don't attempt to disturb the doctors and nurses in their work. Spiritual advisors and counsellors can help them find understanding of their own agony and also solace.

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