From the Editors’ desk
A rendezvous is a meeting. A tryst with someone who excites you. In the Victorian era, it would also imply a certain time, a fixed place. This 21st-century rendezvous is different from that. Different people with different minds at different places but with a singular purpose of life. All coming together to meet one person-You.
It has been a wonderful experience to interact with each of them. Everyone who has ever had the privilege of doing so only recalls how lucky he or she was to have met each of them. Similar questions were also asked to each of them to understand their outlook and for the reader to understand their diversity of thought.
Dr. M. R. Rajagopal MD needs no introduction. Among the young medicos, he has been popular as the father of palliative care in India and his work has been internationally recognized evident with his nomination for the Nobel Peace prize 2018. ‘HIPPOCRATIC – 18 EXPERIMENTS IN GENTLY SHAKING THE WORLD’ is a documentary film featuring Dr. Rajagopal, which was released in 2017. His answers carry clarity of thought and reflect the simplicity of his soul.
- How would you describe palliative care to our young readers? Why do young medicos need to understand palliative care?
In one sentence, palliative care is the treatment of serious health-related suffering.
As a medical student, I was taught to prevent, diagnose and treat diseases. There was no reasonable education about pain or another suffering. There was nothing in our course about how to help a dying person and family. Isn’t the time around death a great source of suffering for the dying person and family? We turn our backs to the issue, pretending that it is none of our business.
Unfortunately, though half a century has passed since I was a medical student, there is no significant change in medical education. The young doctor still feels helpless and runs away from suffering which continues unrelieved.
Like in most western countries, palliative care has to become part of medical and nursing education. The medical student has to learn how to assess and treat pain and other symptoms and also psychological, social and spiritual issues.
The world health organization defines palliative care (2002) as:
“Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
- Provides relief from pain and other distressing symptoms
- Affirms life and regards dying as a normal process
- Intends neither to hasten or postpone death
- Integrates the psychological and spiritual aspects of patient care
- Offers a support system to help patients live as actively as possible until death
- Offers a support system to help the family cope during the patient’s illness and in their own bereavement
- Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
- Will enhance the quality of life, and may also positively influence the course of illness
- 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.”
It is important to put the phrase “life-threatening” into perspective. Life in this context should not be measured only in terms of length. “Life” in its full sense is more than just existing. A person paralyzed from the waist down, if confined to his bed and not allowed to move or to have any enjoyment in life, does have a life-threatening problem.
2. Having a post-graduate degree in Anesthesiology, what made you choose Palliative care?
Anesthesiology came into being to relieve pain. Many of the measures that we use to relieve pain during and after surgery could, with some modifications, relieve pain due to many causes. There is nothing new about this thought. All our textbooks in Anesthesiology have a chapter each on acute pain and chronic pain. But it is seldom studied or practised. When I became head of the Department of Anesthesiology at Calicut Medical College, I started treating people with pain. I realized that pain was only one of the numerous problems that people with life-limiting diseases live with. The search for an answer took me to the concept of palliative care.
3. How did a career in Palliative medicine affect you personally?
It has given meaning to my life. I no longer have to run away from suffering; I now can face it and help the person with the disease to improve his reality as much as possible and try to help the person to enjoy the remaining part of life. That would mean looking after any unfinished business, giving a lot of love and receiving love. When someone comes begging to be killed, and the next day sits up with a smile and has breakfast, I find it immensely satisfying.
4. What does ‘death’ mean to you?
Death is the inevitable consequence of life, a reality that is as certain as it is unpredictable in terms of time. When a person has come to accept it in this fashion, it is indeed possible to find enjoyment in the time left for him or her. If that acceptance does not come to the person and the family, then the remaining life is spent going from city to city doctor-shopping, in hospital corridors and in imaging rooms.
The time around dying can be a precious time for the person and family if there is togetherness, prayers for the believers, and expressions of love. Death on ventilators in the isolation inflicted by intensive care units even in incurable diseases is a human tragedy that the brave new world of modern medicine inflicts on human beings in India and in many parts of the world.
5. Why is ‘dying with dignity’ important to you? Would you like to comment on the recent judgment of hon. Supreme Court on passive euthanasia?
The confusion around the phrases ‘passive euthanasia’ and ‘death with dignity’ is unfortunate.
Dignity in the dying phase is something I would consider a human right. The over-medicalised death with a tube in every orifice with the physical torture of periodic endotracheal suction and a myriad of procedures not only cause suffering but also offend dignity in the worst possible way. Unfortunately, the law regarding euthanasia/assisted suicide in the USA came to be called the “Death with Dignity Act”. When I talk about dying with dignity, it has nothing to do with euthanasia; I am talking about a natural death with dignity.
The term passive euthanasia very commonly employed in lay discussions and which came to be used in the Supreme Court judgment of March 2018, again, is unfortunate. Euthanasia, as defined by Indian Council of Medical Research, is “the intentional act of killing a terminally ill patient on voluntary request, by the direct intervention of a doctor for the purpose of the good of the patient”. As the Indian Council of Medical Research continues to point out, the term ‘passive euthanasia’ is misleading. Euthanasia cannot be passive, because there is an intentional act aimed at killing.
Disconnecting an artificial ventilator or stopping another life support measure cannot be called ‘passive euthanasia’, because the intention is only to allow natural death. As the ICMR points out, “the term passive euthanasia is an obsolete terminology and should be avoided, as euthanasia cannot be passive, and withholding or withdrawing a potentially inappropriate treatment in a patient dying with a terminal illness cannot be construed as an intention to kill.”
6. You have shown concern about health care costs pushing several families below the poverty line. However, medical school teaching focuses only on chasing the diagnosis. In your experience, how can doctors realize when to draw the line and avoid further unnecessary expenditure?
According to a 14th-century aphorism which every doctor hears as she/he enters medical college, a doctor’s duty is ‘to cure sometimes, relieve often and comfort always’. As the ICMR points out in March 2018, there are no exceptions to this rule.
Health is defined by the World Health Organisation as ‘a state of complete physical, social and mental well-being and not only the absence of disease or infirmity.” This definition of 1948 is still valid. A health care system that caters only to diseases and causes financial and social destruction of families would be an anomaly that clearly destroys health. Unfortunately, this happens to alarmingly huge numbers today. A study published in May 2018 in the British Medical Journal says that in a single year in India, 55 million people are pushed below the poverty line by out-of-pocket health care expenditure. How can this be true health care? It is something that destroys health for at least 55 million people in the country.
It is sad that medical education in India today concentrates on diagnosis and cure, with a little bit of prevention on the side, practically nothing on relief of physical suffering as pain and other symptoms or of relief from mental or social suffering.
If there is adequate communication between the patient and family, and if patient and families are encouraged to understand the prognosis, our experience shows that majority of people accept an alternative to pointless expensive disease-focused therapy that only prolongs life by a few months.
It is unfortunate that in most of India, there is nothing to be offered as an alternative to patient and family. Palliative care integrated into health care can give them hope. This alternate hope is a realistic hope of achievable targets. Adequate communication encourages the patient and family to focus on what holds meaning for their remaining lives and can encourage them to pursue achievable targets.
Eventually, this can be achieved only by a transformation of medical education and a medical system where true health is practised and taught and not only diseased focused management.
7. You work in close proximity to severe pain on a day-to-day basis. How do you protect yourself from burnout?
I work in close proximity more to pain relief than to pain. When someone has been rolling in pain for weeks, and when your simple intervention enables that person to sit up and have a meal, the experience is enormously satisfying.
When I am unable to relieve suffering (as is bound to happen in some situations), I tell myself that I am only a human being and find comfort in the knowledge that I have done my best under the circumstances; I am not God; this is all I can do.
Still, sometimes, enormous suffering can become overpowering. Then the answer lies in sharing one’s experience with colleagues. A problem shared is a problem halved.
8. Lastly, do you have any final message for our readers?
I expect that the majority of the readers in Lexicon would be medical students. I hope every medical student understands the huge privilege that has been our good fortune to come into. What other profession offers so much open opportunity to make such a positive impact on other human lives! Teachers do, but in health care, you are dealing with human beings at the most vulnerable time in their lives. They are physically and mentally destroyed and often socially and financially too. You, the doctor, holds all the cards; you are in a position of immense power. This huge imbalance of power makes us vulnerable to the temptation of abusing that power.
For we as doctors, practice an inexact science. We never totally understand the human body and that itself makes our treatment empirical. We have to shed our aura of non-existent omnipotence and become human. We should not be afraid of saying ‘I don’t know. There are several occasions in which I had to say ‘I do not exactly understand what is happening here, but I think the following are possibilities; I am going to try to do my best to make you feel better’.
This may be challenging. But donning the vest of a non-existent power makes us vulnerable when our treatment fails or when the patient discovers on Google that one sentence that we spoke was inaccurate.
The answer lies in recognizing the possibility that we may be tempted to abuse our power, in accepting our vulnerability and insecurity and still doing the best for the patient. Empathy lies in trying to put ourselves in the patient’s shoes and in trying to understand their suffering and their points of view. When we convey to them (not necessarily with words, but more with our eyes and face, that we care for them, they usually respond with gratitude and maybe, even with a blessing.
Unfortunately, our medical education did not empower us in practising empathy or applied ethics. In the West, palliative care is taught to medical students from the time they enter their clinical studies. They learn communication skills. As the medical education in India has still not achieved this, the onus lies on us doctors ourselves to make a beginning. I would urge every young doctor in the month after their final examination or in the period immediately following compulsory rotating internships, to gain a little bit of palliative care knowledge and expertise. Courses of varying length from a few days to six weeks or even one-year fellowships or three-year M.D. (Palliative Medicine) are available in India. Even if you do not want to specialize in palliative medicine, at least attend a short course and get empowered to treat people’s suffering and to get more enjoyment out of your profession.
Secondly, we live in a world which in the last half-century transformed health service to a really successful health care industry. The industry’s motive is to make a profit; not just to treat people. Some elements of the industry will try to make an unreasonable profit out of human suffering. It is inevitable, particularly in a poorly regulated health-care industry as in India. You then become a pawn, just a tool helping that industry to make even more profit by contributing to human suffering. That will truly be a pity. When you look at yourself in the mirror, you need to be able to look at your own image with self-respect.
Of course, you need an income. Fortunately, in our country, there are many institutions which provide health service without seeing itself as an industry. Choosing to draw some lines and refusing to be part of unacceptable exploitation of patients may mean that you may earn a little less, and eventually that you drive a smaller car and live in a smaller mansion, but then you live with self-respect.
As it happens, you have to be on one side; there is no neutral ground. As Dr Donald Berwick says, “To try to avoid the political fray through silence is impossible because silence is now political. Either engage or assist the harm. There is no third choice.”
Dr. Reena George MD, DNB (Radiation Oncology) is Professor and Head of Palliative Care at the Christian Medical College-Vellore (CMC). She is the founding editor of the online Journal of Palliative Care. She also recently authored a book titled-‘One Step At A Time’ about the birth of CMC-Vellore. She carries an aura of love; care and empathy that doesn’t fail to leave untouched every soul that passes by.
1. Could you briefly introduce yourself and your work in Palliative care?
I graduated from the Christian Medical College Vellore in 1991, completed postgraduate medical training in Delhi and joined the Department of Radiation Oncology in Vellore in 1994. I spent three weeks with Dr. MR Rajagopal and the palliative care team at Calicut in December 1998. A few days after I returned, bearing in mind the old adage, ‘Start low, go slow but do’; I started a weekly palliative care clinic in Vellore. It was just a desk, a register, a palliative care proforma, the patient and myself. I learnt so much from those early patients.
The clinic continued until till mid-1999 when I went on study leave to the United Kingdom under the mentorship of Dr. Robert Twycross. After returning to Vellore in 2002, with the invaluable support of John Lunn, an interdisciplinary team was trained in CMC and in March 2004 we became a separate unit providing hospital-based and home care services.
Our doctors, nurses, social worker, psychologist and administrative staff have researched and developed clinical protocols; helped bereaved families access education and employment, taught palliative care and communication skills to a variety of groups- from students of theology and social work to family physicians and hepatobiliary surgeons. Nearly a hundred radiation oncology residents who have been mentored in palliative care have gone on to integrate palliative care into their practice. Those who have completed our Fellowship now serve in different parts of India and the world. We were also involved in obtaining permission for the notification of the MD Palliative Medicine in India in starting the online edition of the Indian Journal of Palliative Care.
2. Having a post-graduate degree in Radiotherapy, what made you choose Palliative care?
I chose to specialize in Radiation Oncology because it offered an unusual mixture of science and psychology. In oncology, one has a long-term relationship with patients going through a difficult journey. One sees neurology and gynecology, applies physics, mathematics, pharmacology and psychology.
Much as I loved Radiation Oncology I could not close my eyes to the fact that over two-thirds of our patients were incurable at diagnosis. Their suffering-pain, vomiting, breathlessness, bereavement and poverty became a prompting and a vocation. I had initially planned to learn and teach these skills and develop an interdisciplinary team within Radiation Oncology.
In 2004, our administrators suggested that it would be more effective to have separate unit with designated nurses and social workers. I was asked if I would move to full- time palliative care and develop the new unit. It was a difficult personal choice to leave a secure position in a well- staffed department, but it was the right step for patient care and staff development.
3. How did a career in Palliative Medicine affect you personally?
I was thirty when I began this journey, which has changed me. I have been inspired by courageous patients, wise teachers, unselfish colleagues. I have learned to be creative as we try to address medical and social problems unique to our context- battling malodorous wounds, debating between a cow or a goat for a poor widow. But the administrative challenges of a new service, of finding adequate resources from year to year, of juggling the needs of patients, trainees, staff and family, of witnessing suffering for twenty years-that does take its toll.
I have also received much. My patients have taught me about spirituality and psychology, pharmacology, economics and literature. The realization that many people have died without pain, that bereaved families have found peace, that our students have helped and will help many more patients brings deep satisfaction.
4. What is death?
Death, from a purely utilitarian point of view is the cessation of the bodily functions of an organism and the return of the elements to Mother Nature- ashes to ashes, dust to dust.
For me, death is the transition to a larger, more transcendent life. Like the unborn child who cannot imagine the nature of life after the womb, my understanding will never be adequate to comprehend that greater reality.
We are only the midwives who make the journey a little less frightening, a little more comfortable.
5. Why is dying with dignity important to you?
When I was fourteen years old I had the strong conviction that I would like to have time to prepare before my own death. Even at that age it seemed to me that the final months of life are a sacred journey.
As a young oncologist, I realized that death is often messy, heartbreaking. Practical problems such as pain, hygiene, continence, nausea can make the final months unbearably difficult. During the years when I was toying with learning palliative care, in order to begin to understand the impact of pain, I decided to go through my first childbirth without analgesia. Needless to say, – I was convinced pain relief was crucial! Five years later, someone suggested I try an epidural for my second pregnancy to see the difference pain relief made. I realized that when the urgent symptom is addressed, one is in a frame of mind to engage with what is deeply profound.
I think a basic human need, when facing death, to have unbearable symptoms made bearable and to have at least one person who cares about you. Simple, inexpensive measures can make the difference between peace and agony, between torture or transcendence.
6. As a professor and a head of the department, do you feel that empathy is gradually declining with physicians of the newer generation? Is there a remedy?
If I could take analogy of a seed, many of our young physicians have the inner seed of empathy. But the soil of a today’s health care scenario may not always nurture it. In the era before diagnostic tools, physicians depended on a detailed history, a careful physical examination and meticulous clinical follow up. If a health system rewards only one-upmanship in using ‘the latest technology’ the seeds of empathy may never germinate.
Further, if we select people into medical schools based primarily on their ability to absorb factual knowledge and to compete with others in rapid recall, we run the risk of sieving out some of our best seeds.
What is the remedy? Adequate time to listen to patients; curricular activities where the student can share and reflect on the lived experience of a patient; well thought out ways to transmit and assess communication skills; workplace based assessments that include patient feedback; zero tolerance for unethical behavior or cruelty, positive feedback for those who go the extra mile. And of course, good mentors who ‘walk the talk’, who provide encouragement, understanding and constructive feedback.
7. How relevant and important is palliative care to the modern medicine of our time?
Palliative care is of vital importance to humanity. If we look back, mortality from infectious diseases has reduced significantly after the discovery of antibiotics. As a young radiation oncologist I often wondered when the equivalent paradigm shift in the treatment of cancer would happen. It seems to have begun with the advent of targeted therapies. We see long-term remissions of cancer without cytotoxic chemotherapy or sophisticated radiotherapy.
It is unlikely, however, that modern medicine ever will, (or even want to), conquer death. As long as people die, palliative medicine will be important. In a world of growing technology and costs, palliative medicine reminds us of mortality, ethics and empathy; about quality of life, pain and symptom control; about the great strengths of patients and families.
I trust that palliative care will continue to do its bit to ground the fascinating achievements of modern medicine in the bedrock of compassion, prudence and humility.
Dr. Robert Twycross DM, FRCP is renowned international expert in palliative medicine. Having taught in more than 50 countries across the world, he has a deep understanding of what unites life as well the cultural nuances that diversity the common experiences. He was a pioneer of the hospice movement during the 1970s, when he helped palliative care gain recognition as an accepted field of modern medicine. Dr. Twycross served as the Director of the World Health Organization‘s Collaborating Centre for Palliative Care and, until recently, was a Director at Palliativedrugs.com. At a ripe age of 78, he continues to remain active both physically, and mentally, and remains a great inspiration to us all.
- Could you introduce Palliative Medicine to our young readers?
We need a simple definition. The World Health Organization, which has been a great protagonist in palliative care for over forty years, offers a definition that is a page long. However, we can describe palliative care in three words – care beyond cure; and, as medical students discover, most patients cannot be cured. Some conditions are chronic but also are progressive and ultimately fatal. So, palliative care is to do with the chronic, progressive, fatal disorders when they reach the later more advanced stages, when comfort becomes even more important.
2. What is death and how does Palliative medicine approach death?
Asking what is death is a profound philosophical and theological topic. From a strictly narrow medical point of view, death means the end of your physical existence – you’re no longer here and your body decays. The question of does consciousness survive beyond the grave is a separate issue. As doctors we have to concentrate on the here and now. Of course, we are all prone to psychological disturbances as we approach the end of our lives. This is because until then we have been in-charge, reasonably fit and been able to plan for tomorrow. But now, we are losing control, becoming unfit and things are being done for us and to us! Therefore, this is a very demanding time for people who have been fighting their disease to switch and accept the inevitable and achieve inner peace. Palliative care has a holistic approach and is concerned about the whole person – body, mind, spirit and social environment.
3. Would you like to comment on the recent judgment of hon. Supreme Court of India on passive euthanasia? Do you think it could be misutilized in Indian health care setting?
The term passive euthanasia is a bad term, partly ambiguous, but I think what the Supreme Court has done is to accept that people can decline treatment even if that means that their death will come sooner, which is a basic human right. To call it Passive euthanasia only complicates the issue and confuses people.
Ultimately, like many things in life, you have to experience Palliative care. You cannot learn palliative care from a textbook or a lecture room. You can get a lot of basic and important facts but to understand palliative care you have to live palliative care, and that means working in it.
4. In several countries with limited resources, people often question themselves if they need to invest more in someone who is already dying. Why is dying with dignity important?
I would like to suggest that one mark of a civilized society is how well it looks after the disadvantaged, the disabled and indeed the dying. To dismiss them because they are not economically productive does not make sense to me, and it goes completely against my understanding of teachings of Jesus.
5. Several groups including philosophers and mental health professionals have debated about the meaning of pain; and some argue that pain has a role in the elevation of the human spirit. How do we explain to them the use of painkillers or psychotropics?
As doctors, we need to relieve as much suffering as possible. To say, ‘go and suffer, it’ll do you good’ makes no sense in practice. It’s not compassion. Compassion is feeling, understanding and doing something about it. Most human beings have a modicum of compassion, some more than others. Compassion demands that you do your best to relieve the suffering of another person. To me, it is a no-brainer and is the whole basis and foundation of medicine.
Antidepressants are of value in people who have clinical depression, which is a standard practice. To put it quite simply, when one has clinical depression where biogenic amines get out of balance, then an antidepressant is used to help rebalance. Many people benefit with antidepressants and other such psychotropics when used appropriately.
6. Is there any message that you would like to give to our young medicos?
Most of my medical career was in palliative medicine, and that can make me biased towards it. Palliative care is a demanding medical specialty – to be working with people many of whom are at the end of their lives where addressing psychological disturbance and readjustment is necessary. However, it is not only demanding but is also very rewarding because you are adopting a holistic approach – responding to people as human beings and not human machines. That brings a different and healthy dimension to medical practice. In essence, even if you are not trained in psychiatry or psychology, in palliative care you need to develop the skills of a psycho-physician, supported by mental health professionals to help those patients who come at the more difficult end of the spectrum.