Indian Journal of Best Supportive Care
February 2012

Editor's Message

Dear Readers,

We are happy to present to you the first issue of the Indian Journal of Best Supportive Care.

As oncologists who are deeply involved in bringing palliative care to terminally-ill cancer patients in geographical areas where specialized end-of-life care is unheard of, we have routinely come across cancer patients who have lived and died without their cancer ever having been treated.

At the Ganga Prem Hospice cancer clinics, when we diagnose patients as suffering from cancer, under-privileged patients often require sustained follow-up and counseling to ensure that they actually visit a cancer centre and get their cancers treated, if not for curative purpose then for palliative treatment when the cancer is advanced beyond the curative stages.

This has made us realize how challenging a disease like cancer is, not just for the patients, but also for the medical persons involved in caring for these patients. It is not enough just to give medical advice, it is just as vital to follow up with the patients and their families, counsel them, and explain to them that a treatment opportunity lost now could mean untold pain and misery for the patient at a later stage. Sometimes, cancer care work also involves arranging for finances for patients' treatment and even procuring food and ration for them as many patients are too poor to sustain themselves and a cancer is like the last straw on the camel's back. Our experience has made us feel that palliative care and supportive care are not just confined to the last few days of a cancer patient's life, but have to start at a much earlier stage.

The Indian Journal of Best Supportive Care is a small step in the direction towards putting together the experiences of oncologists, doctors, carers, counselors, volunteers and even patients themselves, for an in-depth understanding of the various facets of cancer care.

Dr AK Dewan
Editor in chief

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Euthanasia in Terminally Ill Cancer Patients
by Dr DC Doval

Euthanasia is when a doctor intentionally kills a person by the administration of drugs. The word euthanasia comes from the Greek words "eu" ("well") and "thanatos" ("death"). It means a painless and gentle death. But in modern usage, it has come to imply that someone's life is ended for compassionate reasons by some passive or active steps taken by another person. The discussion surrounding euthanasia is complicated as there is confusion about the exact terminology used and it is essential that these are clarified at that person's voluntary and competent request.

• Physician-assisted suicide (PAS) is when a doctor intentionally helps a person to commit suicide by providing drugs for self-administration at that person's voluntary and competent request.
• Non-voluntary termination of life is the administration of medication to end the life of a patient who is unable to give competent request for this at the time of administration.
• The withholding or withdrawal of treatment, such as parenteral fluids, at the request of the patient is not euthanasia.
• The administration of medication to control symptoms, such as increased analgesia or sedation for a confused and agitated patient, is not euthanasia as the intention is the management of the symptom rather than the intention to kill the patient - the principle of double effect. When it comes to terminally-ill patients, it is natural for the subject of euthanasia to come up. Dr Dinesh Chandra Doval discusses the arguments for and against euthanasia.

Pro-euthanasia arguments

• Legalising euthanasia would help alleviate suffering of terminally ill patients. In cases of individuals suffering from incurable diseases or in conditions where effective treatment wouldn't affect their quality of life, they should be given the liberty to choose induced death. The motive of euthanasia is to "aid-in-dying" painlessly and thus should be considered and accepted by law.
• In an attempt to provide medical and emotional care to the patient, a doctor does and should prescribe medicines that will relieve the patient's suffering even if the medications cause gross side effects. This means that dealing with agony and distress should be the priority even if it affects the life expectancy. Euthanasia follows the same theory of dealing with torment in a way to help the patient die peacefully and come out of the compromising situation.
• Euthanasia should be a natural extension of the patient's rights allowing him to decide the value of life and death for him. Maintaining life support systems against the patient's wish is considered unethical by law as well as in medical philosophy. If the patient has the right to discontinue treatment why should he not have the right to shorten his lifespan to escape intolerable anguish?

Arguments against euthanasia

• Mercy killing is morally incorrect and should be forbidden by law. It's a homicide and murdering another human cannot be rationalised under any circumstances.
• Palliative care and rehabilitation centers are better alternatives to help disabled patients or patients approaching death to live a pain-free and better life.
• Family members influencing the patient's decision for euthanasia for personal gains like wealth inheritance is another issue. There is no way you can be really sure if the decision towards assisted suicide is voluntary or forced by others.
• Even doctors cannot predict the period of death firmly and whether or not there would be a possibility of remission or recovery with other advanced treatments. So, implementing euthanasia would mean many unlawful deaths that could well have been survival later.
• Mercy killing would cause decline in medical care and cause victimisation of the most vulnerable society. Would mercy killing transform itself from the "right to die" to "right to kill"?
• How would one assess whether a disorder of mental nature qualifies mercy killing? What if the pain threshold is below optimum and the patient perceives the circumstances to be not worthy of living?

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Communicating with Patients Meaningfully
by Dr Rupali Dewan

All over the world, millions of terminal cancer patients need hospice and palliative care but cannot access it. One of the barriers is a lack of understanding about palliative care and how it can benefit people.

A person needs three things to be truly happy in this world:

• Someone to love and listen to
• Something to do
• Something to hope for

The majority of patients know of their impending death whether they have been told or not. Patients have physical illness and yet they are mentally sound—they are capable of making decisions. Their wishes and opinions should be respected. They should be listened to and consulted. They should be allowed to vent their feelings whether of guilt, anger or plain sadness. They need a human being-a listener, a friend, nurse or spiritual guide.

The most meaningful help we can give any relation or patient is to accept and contain their feelings before actual death. If we tolerate their anger even if it is directed at us or God, we are helping them take a great step. One of the resident doctors of an Oncology Department expressed his opinion on hospice care as, "Senior doctors rarely visit these patients. They make U rounds-a sheer waste of time on people who cannot be helped any longer." To work with and listen to terminally ill cancer patients requires a certain maturity which comes with experience. Doctors need to know when not to prescribe medicine or operate on these patients. Doctors need to learn that they can help by listening, touching, praying and simply sharing at an emotional level.

Never use empty words when conversing with terminally ill cancer patients.

Communicate with them meaningfully. A terminally ill cancer patient is aware of the end.

Despite the need for optimism, no part of the diagnosis should ever be hidden. Truth can always be delivered with hope since one is uncertain about the future. I remember the exceptional case of one of my husband's patients who had metastatic liver disease. He was told that his life expectancy was only three months. The prognosis was so certain, that on the prescription slip it was written, "Prognosis explained with limited life expectancy of three months." The patient came to the Out Patients Department 1 years later carrying the same prescription paper. He said, "I have been going to my office since the diagnosis of metastatic liver disease. I got all my daughters married. My son is carrying forward my business. I have proved this Doctor wrong." My husband could not reveal his identity but he learnt that statistics do not apply to individuals. My husband shared with him, "Miracles do occur. You are an exceptional individual. We can help you live a comfortable life."

Doctors must stop letting statistics determine their beliefs. Statistics are important when one is choosing the best treatment plan for certain cancers, but once the choice is made, they no longer apply to that individual. Despite the fact that a patient knows about the terminal phase of life, he may want to be of some use to somebody by donating his eyes or kidneys. This option appeals to some patients as they feel they can still do something; they feel they can still live after death or their eyes can continue to see. It is not surprising that a little touch of humanity elicits such an overwhelming response.

These patients teach us and their own families profound lessons on how to live. Most patients maintain some form of hope until the last moment. This hope may be in the form of alternative therapies, trial drugs or even a miracle from God. The patient should feel that he will be taken care of and that the palliative care team will do their best wherever possible. However false hope of curing cancer should never be given. Patients are not afraid of death, but they are afraid of dying because of the accompanying sense of hopelessness, helplessness and isolation.

There is a time in a patient's life when pain ceases. The mind slips into a trance state and the need for food becomes minimal. This is the time for the 'therapy of silence' with patients and relations. Unfortunately many relatives cry the loudest for help at this time. Those who have the strength to sit by the side of a dying patient in silence will know that this moment is neither frightening nor painful but the peaceful cessation of bodily function. Some young doctors start cardiopulmonary resuscitation even with dying terminally ill cancer patients. Mature doctors watch them die in silence.

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Quality of Life Issues in Palliative Care
by Dr Ashish Goel

Although many developments have occurred in the field prevention and treatment of cancer, death from this disease is still very common. Palliative care is defined as the active total care of patients whose disease is not responsive to other curative treatment. It encompasses all treatment modalities and is aimed at enhancing quality of life rather than curing of the disease.

Traditionally palliative care was introduced as the last alternative once active treatment became ineffective in prolonging survival. The modern view does not make this strict conceptual distinction between active and palliative treatment. Rather the goal is both-life-prolonging and providing comfort at the same time.

Care of the terminally ill cancer patient

When a loved one is diagnosed with a terminal illness, many emotions rock the psyche of the patient and the family. After they pass through stages of sorrow, they eventually accept the illness and are faced with the difficult decision of holding onto hope for a cure and continuing aggressive treatment versus palliative care. Maintaining a holistic view of patients with cancer and helping them to achieve the best possible quality of life is critical. Palliative chemotherapy, radiation, surgery and interventional pain management can alleviate cancer-related physical symptoms; however, health-care providers must not forget the patient's dignity, self-worth and personal goals. After series of hospitalisations, patients often become debilitated. As they desire to remain independent in maintaining their self-care and mobility, they may become concerned about becoming a burden to their family. For dying patients, it is most important to improve their quality of life and relieve their suffering.

The three leading fears of dying patients:

1. Dying in pain
2. Dying alone
3. Dying in an institution

Goals of therapy for the terminally ill:

• Advance Care Planning (living will, durable power of attorney for health care)
• "Do not resuscitate" (DNR) orders
• Pain and symptom management
• Death pronouncement
• Notifying the family (breaking bad news)
• Death certificates (cause of death, etc—NOT cardiac arrest for most patients)
• Autopsy requests

Quality of life issues in palliative care

Traditional outcome parameters such as survival, complication rates, recurrence rate, etc. have long been in use in conventional medicine. Such outcomes are valid only if survival is the main therapeutic goal. However by definition, survival is not the primary goal in palliative care. How can one therefore assess if the goal of palliation was achieved and that the patient was benefiting from it? The only people who can answer this question are the patients themselves. Each patient's definition of quality of life is unique. It is therefore important to treat each person as an individual and to continue to view the patient holistically. Controlling cancer-related symptoms can ameliorate the patient's limited remaining time with family and friends.

Measurement of quality of life

Several questionnaires have been constructed which help patients to express their subjective perception and evaluation about whether they feel comforted or not. Assessment of Quality of Life by definition means a measurement of overall patient well being and functional capacities in the somatic, psychological and social domains in the patient's perspective and not merely the absence of disease or illness. Now what determines whether a patient has a good or bad quality of life? Is it the degree of illness, the course of the disease, the treatment, the family, or the type of supportive care? Psychosocial concepts such as negative affect, experienced social stigma, social desirability, positive thinking, or therapy-related expectations are equally important correlates of a patient's well-being.

There are certain problems in the palliative/terminal situation that are not covered in the standard QOL questionnaires described. These include spiritual and existential problems, the care situation, family support/social isolation and specific somatic symptoms. Furthermore, most standard questionnaires are too long for those palliative patients who are terminally ill. To date, most publications have used the STAS (Support Team Assessment Schedule) and the MQOL (McGill Quality of Life questionnaire). Secondly international translation procedures and validation studies have not been performed for a palliative-specific instrument. A short form of the EORTC QLQ-C30 for palliative settings and specific scales addressing spiritual and existential dimensions is under development.

Although several instruments have been developed to measure the quality of life (QOL) of palliative care patients, a rigorous research study has not specifically asked patients themselves what is important to their QOL. It is, therefore, not clear whether these instruments measure what is most important to these patients' QOL. Five broad domains were found to be important determinants of patient QOL:

1. The patient's own state, including physical and cognitive functioning, psychological state and physical condition
2. Quality of palliative care
3. Physical environment
4. Relationships
5. Outlook

The relief of pain at the end of life is the most important issue. Physicians need to acknowledge and communicate to these patients about treatment options available which could improve their quality of life. Providing them with education about their illness and the different palliative care choices can make the patients and families feel empowered to make the best decision.

In summary, the palliative situation poses specific problems for QOL assessment and research. Partially these challenges have been met, particularly in the development of short, easy-to-handle questionnaires. Measurement approaches beyond questionnaires would be an additional option that merits more attention in future. However, it should be noted that a QOL profile is no substitute for a patient-physician interaction. Patient-physician interaction remains the cornerstone of medicine, particularly in palliative care.

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