Pain and beyond
Palliative care workers in India have a lot to be proud of. We have created many successful community oriented palliative care programs, built many hospices and established several hospital-based palliative care programs. In the last 10 years, we have achieved an uninterrupted supply of oral morphine to about 100 palliative care centers in the country. These are major achievements.
However, while it is easy to talk of one's successes, it is probably worthwhile to audit failures. The fact remains that oral morphine reaches less than 1% of the needy in the country even now. In addition, there are no reliable statistics on the volume of oral morphine supplied and we cannot be reasonably certain that much of this is used properly and effectively.
So may be we have not done all that well after all?
Pain relief has been a major focus for palliative care related work in India. Most interventions in palliative care begin with pain relief. So much so, that the layman sometimes equates palliative care with use of morphine. When we discuss the extent of access to palliative care in India, we are at a loss about how to assess it. A compromise formula is to measure it in terms of morphine consumption. The term palliative care has come to be often used synonymously with pain relief. Pain is indeed a major problem and it is easily solved in the majority. The WHO has given us the ladder and those who apply it properly are able to use it effectively in the majority.
However, pain and a few other presenting symptoms are often the tip of the iceberg. They are overpowering and when one has relieved them the person does feel a lot better. But when I have sliced off that part of the iceberg, more of it comes to surface. If I am careful to avoid seeing it, then I am comfortable. I can get my share of satisfaction from feeling that I have effectively relieved some one's pain and breathlessness and I can sleep well.
But the next day, if I am rash enough to ask the person, "Did you sleep well?" then he may say, "Well, not very much". I still have an avenue of escape; I can stop asking questions; prescribe a benzodiazepine and send him home. But is that good enough palliative care?
Michael Kearney talks about "superficial work" and "depth work" in relation to this. "Intervention to bring experience of soul", for him, is depth work. If I adapt that to the iceberg analogy, then superficial work is correction of problems that are clearly visible and depth work what is submerged and naturally more difficult.
After 20 years of palliative care in the country, it is time that we give serious thought to the quality of care that we are delivering. We need to decide what we are attempting to do and define our objectives.
Herein lies an ethical dilemma. There could be a conflict between achieving coverage and achieving quality. If we have excellent palliative care education and limit the number of people that we care for, then we can give excellent quality service to a few. But does that not violate the ethical principle of social justice? If we give one day of training in pain relief to a lot of doctors and nurses and let them do what they can, will we be violating the principles of beneficence and non-maleficence? Will some patients actually deteriorate and suffer more from ministrations of poorly trained personnel?
Obviously some sort of balance is required - a balance between coverage and quality. One suggested solution is a two-pronged approach - giving short term training in pain management to as many clinicians as possible and longer term training to those interested in palliative care. Even here, we shall need to decide what is optimal in the background of average base line knowledge and practical feasibility. We still do not have the right answers.
The Indian Association of Palliative Care is discussing quality control issues currently. Admittedly, arguments get heated sometimes. This process of discussion is vital. If by virtue of their length, educational programs prevent professionals from taking them up, then they prevent access for patients to palliative care. On the other hand inadequate training would cause harm to patients. The trick is in finding a practical and harmless balance.
Quality issues: How much training is practical?
Is the emphasis on pain management an indication that physicians try to concentrate on what is easiest? Even if it is, it is perhaps pardonable. By doing what is easiest we have a good chance of improving quality of life that much more. But why is pain relief easier than dealing with emotional issues? Is it simply because we have had a lopsided training system that overemphasizes physical problems? If so, we need to rethink this aspect of palliative care education.
Recently we audited a six weeks certificate course in Pain and Palliative Medicine for physicians. It sampled 20 physicians who had done the course some 3 months to 2 years back. They were asked to reflect on the course and bring out their perception of the most important shortcomings of the course. The commonest problem mentioned was that many did not feel confident about handling emotional issues. This, despite the fact that the course did include several didactic sessions on communication as well as role-plays. In a way, this was only to be expected. For a group of physicians, who had never before had any training in communication skills, is it realistic to expect that a short course can enable them to master the art in six weeks?
This raises the issue of objectives of training. I have been part of a team that, for the last 12 years, has worked with a remarkable team of volunteers who have done an amazing amount of good work with patients. Some of them are excellent at teaching communication skills to others. But I also wonder whether some of the work that we do now is questionable. Recently, adapting from a scheme that was done in Calicut earlier, my colleagues and I did a training program for volunteers - 18 hours of class room sessions and one day each of clinical exposure in a clinic as well as in home visits. Then they were free to go out into the community and help others. But at the end of the course I am left with a sense of foreboding. Is it fair to expect them to confront a patient who asks, "Am I going to die"? Is it fair to the patient to have this person delving into their emotional issues?
From painful experience, many of us have learnt that adverse effects and idiosyncratic reactions occur not only to drugs. In fact they often occur to incidents of "communication". A wrong word or phrase at the critical time might be enough for the patient to plunge into irretrievable depression and to make the whole family enemies of the palliative care program.
At a major conference last year in an Indian city, a young nurse gave a much-appreciated talk to an audience mostly composed of oncologists. She had been working in Palliative Care for about three years, a lot of it involving home visits. During the discussion that followed, a doctor in the audience asked her, "What would you say if a patient asked you, "Am I going to die?" "I shall point out that she is better off than many other patients", the speaker replied. "I shall ask the patient to think positive".
With you, I shudder at that response. That was an absolutely cruel response to make to a person who was already suffering and anxious. The nurse obviously meant well; but has been inadequately empowered.
When we talk about quality of training, perhaps we should put in "non-maleficence" as the first priority. Short courses are too short for a proper communication skills training; may be we should just concentrate on "What not to do" and teach listening skills rather than "Breaking Bad News", emphasizing the need for continued education.
More depth work
In the context of poverty and illiteracy in the country, social problems are often huge. Palliative care professionals who are brave enough to explore these issues get overwhelmed and sometimes tend to avoid them thereafter. Non-professional volunteers are often better at analyzing the problem and at coming to terms with realities. Once we learn to accept our own limitations and learn to be satisfied with what we can do, then we lose some of the fear of confronting the issue and find that we are often able to help a lot by doing what we can. Attempts at rehabilitating families often fail, but when successful, are unbelievably worthwhile.
We do have some evidence that professionals consciously or unconsciously avoid subjects that they are not comfortable with. Issues related to sexuality are a case in example. Sexuality is something that often affects quality of life profoundly. However, it is often ignored because of the health workers lack of confidence in handling such issues. In addition to this there is spirituality. It is one of the areas that we are least clear about. At the moment, the most important lesson related to spirituality that I convey to my students is again related to non-maleficence. In our multi-religious community, time and again I see attempts at spiritual support causing trouble. The term spirituality is often used synonymously with religiousness. Religion is often pushed down the patient's throat when the person is at his vulnerable worst. And sometimes the overt obvious attempts are less damaging than subtle sustained ones.
I recognize however that existential issues and issues related to one's faith can indeed be very important. I also recognize that a person confident of doing the right thing ("meeting people where they are", as Rev.Lunn so aptly puts it) can be of great help. I am just wondering whether the issue is adequately understood and instructed. As Michael Kearney points out, "The way care is given can reach the most hidden places", reminding us the way we do our "surface work" can still make all the difference. And "depth work" need not involve profound religious or philosophical discourses. It is really about "connecting with those very simple and very ordinary aspects of life that have in the past, brought a sense of depth or significance; what Kreinheder calls "meaningful things done meaningfully". This might involve the sharing of old memories, spending time with people we love, visiting a place of special importance, returning home from the hospital, or if this is not possible, bringing something that we value into the hospital.
In short, "love" and "care" form essential ingredients of palliative care today and I hope, of health care as a whole tomorrow.
In its second decade of existence, the Indian Association of Palliative Care is busy planning for the future. It has decided on some priority areas for work; training, education and service development are among its priorities. Setting standards for training are particularly important. Today's trainees are trainers for tomorrow and will reach out to large numbers. We need to ensure that they practice pain relief well, but also keep learning how to do "depth work", looking for the submerged parts of the iceberg. This will be possible if we take the following points into cognizance:
1. Recognize our failures. Palliative care workers so far have had successes as individual groups but not as a collective force.
2. Define objectives for future action.
3. Audit training programs already carried out, identify lacunae and take corrective measures.
4. Considering that we may have to continue short term training programs for palliative care physicians, plan and support refresher courses for them that offer opportunities to refine "superficial work" and to learn "depth work".
5. Try to achieve a balance between coverage and quality; ensure that a system of audit is constantly in place, both for palliative care services and for training.
6. Recognise that emotional support can be difficult to provide, but essential, and communication issues must be given their rightful place in training programs, with emphasis on the "do nots".
7. Recognise that social problems can be of huge dimensions; and that we need to learn to accept our limitations and to do what we can. Every little bit helps.
8. Acknowledge that we are often simply afraid of tackling difficult areas like sexuality and that we need to try to overcome our own fears.
9. Recognise not only the importance of spiritual support, but also the danger of confusing it with religious support and the danger involved in its delivery in a multi-religious community.
Adapted from the keynote address at the 13th International Conference of the Indian Association of Palliative Care at Chenai, India.