Credit to the progress in medicine, patients suffering from chronic illnesses now have a much longer lifespan than the earlier generations. While doctors may be successful in giving such patients a longer life, both the disease and the treatment can cause pain and several other side-effects and suffering. This is where palliative care becomes significant as it gives patients an option for pain and symptom management, and a promise towards a higher quality of life.
In conversation with TC46, the Founder of Pallium India Dr MR Rajagopal explains the benefits of palliative care in cancer treatment, how to find the nearest centre in India, and even shares a model palliative care program to put your mind at ease.
1. What is palliative care?
In one sentence, palliative care is the prevention and management of serious illness-related suffering.
Think of someone who has been found to have cancer. Let us NOT think of that person as a “cancer patient”; let us try to see him/her as a human being with feelings and emotions; let us try to see him/her as a part of a family and the community. The person’s suffering is not only because of abnormal growth of some cells somewhere in the body. What he/she feels is fear, anxiety, depression, guilt and a myriad of other feelings in addition to pain or other physical symptoms. There may also be concern about money and other domestic issues as well as possible loss of income and even loss of the position in the society and the family. All these together may bring in questions like:
“Why me?”, “Why did God do this to me?” or “What is the point of my being alive? I might as well be dead.”
Conventional medical system too often concentrates on the tumour leaving many aspects of suffering to be dealt with by the person and the family. But every element of suffering is important and the person and family need support. They need someone to take the pain and other symptoms as important issues and to deal with them appropriately. Pain or breathlessness can be beyond our power of imagination and needs to be addressed scientifically, but with compassion. They also need someone to listen, to remove unrealistic fears and to plan for future treatment and for future life.
Every member of the family, including children, suffers with the patient and their needs also need to be considered. Palliative care recognises all the above needs and does whatever is possible.
2. When is palliative care used in cancer treatment?
Palliative care should start when illness-related suffering starts. That means that it may have to start as soon as the health care system sees the patient first. Even before the doctor has arrived at a diagnosis the pain may have to be treated, and if the person looks exceptionally anxious, there should be a person to gently lay a hand on a hand and say “You look anxious, would you like to tell me about it?” and then to reassure, “We are going to take the best care of you.”
The official World Health Organisation definition of palliative care has a footnote which says that palliative care “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications”. World Health Assembly in 2014 passed a resolution saying that palliative care is to be integrated into all health care.
This can be achieved only with a palliative approach in which every doctor, nurse or other health care professionals is well-versed with the principles of palliative care and applies them to one’s regular practice. Difficult problems, whether they be symptoms or psychosocial or spiritual issues, may need a specialist palliative care unit to look after them.
3. Where can one go for such supportive care during one’s cancer treatment?
Once health care providers give attention to the suffering along with treatment of the disease, chemotherapy or radiotherapy-induced symptoms take centre stage in management. When given adequate care and attention, much of the suffering can be removed. Till recently, palliative care was not taught to students of medical, nursing and allied professions; but from 2019, most aspects of palliative care have been included in undergraduate medical curriculum in India. But this needs to be effectively implemented and practised.
Unfortunately, we do not have a registry of oncologists or departments of oncology who integrate palliative care into their routine practice. And unfortunately, any palliative care reaches less than 4% of the needy in India. Clearly, the vast majority of patients today do not have access to palliative care. A directory of palliative care centres is available at Pallium India and also emailing them can get one connected to the nearest palliative care centre.
A large number of palliative care centres in the country are charitable organisations offering free treatment of the poor. Palliative care as part of the Ayushman Bharat is only taking shape and should be available in the near future.
4. How is palliative care different from hospice care?
The terms of palliative care and hospice care are sometimes used synonymously and interchangeably. But more often, the term hospice care is used to signify palliative care at the end of life. While ideally, palliative care should start at the beginning of the illness-related suffering, it assumes greater importance when curative options are no longer available towards the end of one’s life.
At that time, palliative care helps the person and the family to live with a good quality of life as possible. And, when the time comes, to have a peaceful death. Such hospice care at the end of life can be given either in an institution specifically designed for this or in the person’s home (hospice-at-home) where visiting palliative care professionals and volunteers can give the adequate care and support to the patient and family.
5. Is there any research that proves that palliative care is beneficial for cancer patients?
There is indeed a significant body of evidence that demonstrates the benefit of palliative care in cancer treatment. Apart from the rather obvious benefits of improving wellbeing and indirectly influencing the effect of the mind over the body, it has also been clearly proved that palliative care improves longevity when given along with cancer treatment. This was demonstrated in a landmark study by Temel JS et al in 2010 on two groups of people with a particular kind of lung cancer. One group got only standard chemotherapy, while the other got palliative care along with chemotherapy. The study showed that in addition to improving quality of life and reducing the frequency and duration of hospital admissions, the addition of palliative care increased longevity by as much as an average of three months.
6. Are there any side effects of palliative cancer treatment?
The adverse effects of palliative care are minimal and easy to deal with. Many of the usual fears are unfounded. For example, there is a widespread fear that morphine used for the treatment of cancer pain can cause addiction. While theoretically, this is possible, the chances of a person with cancer getting addicted to morphine are infinitely small. Common adverse effects like constipation or vomiting can be more significant, especially if used by people without adequate experience in using medicines. All in all, palliative care is one that can be safely given without serious adverse effects.
7. How are one’s family and friends involved in this program?
Think of a person getting cancer. Rather obviously, the whole family is affected. The effects on the family members’ lives are notably in the physical, emotional and social domains. When a patient is seriously ill, so much attention is centred on the person that the family members no longer look after their own health. They may discontinue essential treatment for problems like high blood pressure or diabetes and may go into a crisis. They may be subjected to depression, anxiety, guilt or other emotional reactions. There can also be the impact of the loss of functionality of the patient as head of the family, as a bread-winner or a source of support. Children very often are not given explanations and may end up having behavioural disorders or their education and future may be compromised.
By definition, palliative care is aimed at improving the quality of life with patients and the family.
Also, when the patient’s caregivers are empowered in the process of care, it reduces the burden placed on them. Caregiving is often a 24/7 responsibility and any attention to the psycho-social well-being of the caregivers can be precious. Or better still, some respite-care for the patient would be a precious boon so that the family member can take a break.
The community around the patient may have a major role to play. Traditionally in our society, the extended family and members of the community have always lent a hand when a fellow human being is suffering. Modern civilisation may have broken the community spirit to some extent, but the compassionate communities evolving in many parts of the world including Kerala (India), Canada, UK and Australia have growing success by accepting responsibility for lending a hand to any fellow human being in suffering.
8. Can you give us a model of a palliative care program? Does a patient need to take any precautions before getting enrolled in this care?
Minimum standards for palliative care have been drawn up and are available at Pallium India. The most essential part of a model palliative care program is that the concerned care providers should have had basic training in palliative care. This is particularly relevant in India and other low- and middle-income countries because the average doctor, nurse or other health care provider has not typically had basic training in palliative care as part of their curriculum.
In a palliative care program, the patient is evaluated for physical symptoms as well as for elements of psychological, social or spiritual suffering. Symptoms are treated scientifically. Pain, the commonest unalleviated symptom, is evaluated systematically and treated by a combination of medicines. Up to two-thirds of people with cancer may need pain management using an opioid medicine like morphine. Though treatment with morphine is fairly simple, training is necessary simply because the majority of healthcare professionals are not familiar with it.
From the part of the patient, no special preparation is necessary. Of course, it will be important for the oncologist and palliative care doctor to work together with the patient and family in the care of the patient and arm them with adequate information.
9. What are the various therapies involved in palliative care for a person battling cancer?
Typically, a patient is evaluated for the presence of pain or other symptoms. And their emotional and social backgrounds get assessed. Those who have a serious depressive illness or clinical anxiety state may need appropriate treatment along with cancer treatment. Only a tiny minority of people will need interventional procedures like nerve block for treatment of pain; the mainstay of palliative care management is a treatment with appropriate combinations of medicines including opioids. The equally important part of care is answering the patient’s questions, clearing doubts and misapprehensions and if a cure is unlikely, getting the patient and family prepared for the future, including for the end of life.
Disclaimer: This is for the general information for the readers. Please consult a doctor for specific health concerns.
