Cancer care: is it enough?

The goal ... to maintain the highest quality of life possible.

The goal ... to maintain the highest quality of life possible.  

A 65-year-old woman had developed cancer of the breast. She had undergone surgery followed by radiotherapy and chemotherapy. A year later she developed ulceration of the chest and was experiencing acute pain. More than this, it was the emotional pain of disfigurement which was most traumatic. All she wanted was relief from the pain and the care of her family.

Unfortunately, as it often happens, when she became weak and unable to eat, her family admitted her to hospital. The disease had taken its toll and the lady died, away from family and home and much against what she had wished.

Looking back at this example, the pain could have been controlled and anxieties of the patient and the family could have been relieved. Regular assessment and frank communication between this woman and her family may have prevented her from suffering in the terminal stage and dying in a strange environment. Neither the doctor nor the family can be blamed because the management of patients with an advanced stage of a disease is not yet developed in our country.

Cancer is a classical example of a terminal disease, and virtually every patient has the need for relief from distressing symptoms and comfort from anxieties during the course of the disease. Both physical and emotional burdens on patients and families drastically affect their quality of life. The worst thing a person can be told at this stage is that "there is nothing more that can be done". This is directly against the philosophy of palliative care, which focuses on the patient as a person, rather than on the disease and believes that something can always be done for these patients.

When a cure is not possible, there is much we can do for these patients to enable them relief and improve their quality of life — in other words, offer palliative care.

Palliative medicine is a medical specialty, which deals with the management of patients with diseases like cancer.

To "palliate" means to "relieve pain" and "to relieve suffering". Gone are the days when one could offer only empathy. What is new is that tremendous progress has been made in the practice of palliative care and it is now possible to combine compassion with science and give expert medical care to relieve the distressing symptoms of an advanced stage of a disease. There is no need for any person to suffer from pain.

In spite of advances made in diagnosis and sophisticated investigations, we find most patients still being helpless.

Let us imagine for a moment when a person is told "You have cancer". No words describe the wave of emotions that would cross the mind of this patient and the family.

How can we help? A patient and family come to us wondering if anything can be done at all to relieve their pain and other distressing symptoms. We, as palliative care specialists are not going to do something extraordinary for them straight away. We make them comfortable in the environment (home or hospital). After having listened actively to all they had to say, we show empathy and offer appropriate care. We do go through the person's medical history. We understand that they are not only undergoing physical but also emotional, psychological, social, spiritual and financial problems. Unless we address each one of these issues, we will not be able to achieve our goal in improving the quality of the patient's life. We then examine the patient, specifically looking for the cause of pain. We explain the cause and discuss treatment plans and options and give them hope that something can be done to alleviate their symptoms. Cancer is also known as a "family illness", as the family experiences an equal amount of emotional distress. Therefore, we address the family's needs too. Pain is the most common symptom in an advanced stage of cancer, with an emotional component to it too. Cancer pain can be treated with inexpensive medication, following World Health Organisation (WHO) guidelines. Most patients experience relief with oral medication. For severe pain, oral morphine is the drug of choice and should never be denied to patients who need it. Oral morphine is not addictive and should not be reserved for the "end stage", leaving the patient in unnecessary misery. The WHO recommends it for cancer pain and it is used by millions of patients all over the world. In fact it is a well-known fact that a country's development in palliative care is directly proportional to the increased use of oral morphine in treatment for pain. Other symptoms patients may experience are vomiting, insomnia and breathlessness, which can be corrected by appropriate medication or procedures. For example, feeling breathless may be due to fluid collection in the lungs. Once drained, the results are obvious. Where wounds and ulcers are concerned the family can be taught appropriate first-aid, enabling family members to manage even large wounds effectively and inexpensively in a home environment. A patient with a large open wound on his face continued to work (by covering his face), watch television and take liquid food almost to the very end. This is what good pain relief, effective communication and educating family and a regular follow-up can do to a patient's morale. Experiencing swelling of the arm or leg can be painful and demoralising for patients with certain cancers. This can be tackled to some extent by employing skin massage, bandaging of the limb and encouraging activity. Counselling is also very important. Sometimes, even in an advanced stage of cancer, depending on the physical condition of the patient, a surgical procedure can make a difference to the quality of life. For example, a cancerous tumour in the stomach can result in acute vomiting. A "by-pass" can very well help. Similarly, fracture due to bone cancer, can be fixed by the orthopaedic surgeon. Pain is only a part of "total suffering". Therefore, unless other issues which also contribute to suffering like emotional, psychosocial and spiritual problems are addressed, the quality of life will continue to be poor. For this, effective communication and counselling are necessary:

We often come across patients who do not know they have the disease and have anxious family members who do not want their loved one to know this. Very often, patients are quite uncertain about what is going on. There are specialised ways of communicating and counselling and bringing comfort and peace of mind to patients in these situations. Hope is always offered to patients, but appropriate to the stage of illness. It is better to avoid making false reassurances like saying "everything will be alright" when the patients is in a terminal stage. A better phrase may be, "we will do all that we can to help you". In cancer, there can be hope of a cure at the early stage, hope of control, of the disease or hope of palliation of symptoms in a more advanced stage. We maintain continuity of care assessing them at regular intervals throughout their illness, till the very end. Either they visit the palliative care centre or home care is provided. To meet the need of patients, it requires a multi-disciplinary team. It comprises trained doctors, nurses, social workers, volunteers and families, who are the main caregivers. The team also interacts with other disciplines such as surgeon, oncologist, physiotherapist, psychiatrist and occupational therapist. Thus, the three essentials of palliative care are:

Symptom relief

Psychosocial support

Teamwork and doctor-patient partnership Where can palliative care be practised? Palliative care is a philosophy of care and can be practised in the place of the patient's choice. It can be given in a hospital, in a hospice or at home. A hospice combines the love of a home and the facilities of a hospital. Active treatment is given and patients do go back home whenever they want to. All hospitals involved in cancer treatment must have provision for palliative care treatment. Thus, in order to give total care to patients with cancer, a holistic approach would involve surgery, radiotherapy and chemotherapy combined with relief of distressing symptoms due to cancer and its treatment, during the course of the illness.

A million cancer patients are added every year in our country.

About 70 per cent are still presenting themselves for treatment at the advanced stage.

Something has got to be done for these suffering millions.

"To cure sometimes, to relieve often, to comfort always!" is famously described as the duty of a doctor.

The philosophy of palliative care is well brought out in the words of Dame Cicily Saunders, a nurse-turned-palliative care physician and founder of the first scientifically based hospice, the St. Christopher Hospice, London.

"You matter because you are you. You matter to the last moment of your life, and we will do all that we can, not only to help you die peacefully but also to live until you die."

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