Background 

Over twenty years ago I was studying for a PhD in Psychology. My research was aimed at providing a model for the facilitation of medical case conferences by professional advocates, first of all for application in the field of palliative care. The intention was to promote a holistic model. At the time, patient led or centred care was becoming the ideal in interdisciplinary settings but from experience I could never see how a patient could be sufficiently well balanced or informed to take the lead in such difficult circumstances.

It seems to me that wider experience is showing us now that patient led palliative care is often a disaster. As Stephen Jenkinson puts it, we have just provided people with the right to die badly. There was after all no substitute presented for the dialogue between the patient, their carers and their medical and spiritual advisers; and yet what we have also discovered is that this dialogue is not at all easy. I believe that this dialogue, however, has immense potential as a modern forum for the development of wisdom within a culture. To thus keep a genuine spiritual presence in the modern world helps us to avoid mankind becoming hopelessly inflated by its technology and expertise, of letting these things take the place of the creator God, (when this God was misconceived in the first place.)

What I believe now is that a Buddhist practitioner can hold a unique position as a possible advocate. Buddhism in my eyes holds a special place in this dialogue or debate. As far as it is a tradition of contemplating the relevance of impermanence in the present, the Buddhist spiritual position is valid even in the absence of any belief in the supernatural, (while leaving room for such belief to form out of experience.)

We can widen this debate to include any kind of care or education where we are teaching people how to integrate the fact of impermanence into their lives. In our contemplation we can start with light and easier examples, such as for example the transience of the food or music we are enjoying. We train and practice with the lighter weights, which are no different in essence from the heavy ones.

Death is the most weighty and pressing example of impermanence for us personally. While the impermanence of the planet is possibly the heaviest example overall – which the ecological crisis presently is thrusting upon us. In relation to that, surely the ecological crisis is the most glaring example of the fact that it is not a solution to give people control over things that they do not understand.

Advocacy training is the way to give us all a wiser voice. Wise culture can help people towards making wiser choices for themselves; but after centuries of unwise culture and exploitation people lack faith in their culture. Yet to throw out any cultural influence is ultimately to isolate ourselves from support or from offering support to others. In life there is the model of personal independence and choice, which is so much the modern way; or on the other side the way of letting go and surrender. In fact the life where there is the most choice is the one that has both these possibilities to follow at any given moment. Let us examine the above proposition by considering different models of care.

The ‘surrender’ model

In modern consumer society the model of care is the 'patient led care model'. The opposite to this would be the 'body surrender model'. In this latter model the carers are trusted to offer the best care they can provide and the patient accepts whatever care is offered. Psychologically the latter suits a situation where the patient is stressed and needs to let go. The combination of the two models we can see as a ‘Partnership’ model.


The patient still gives feedback to the carers on how they feel their treatment or condition is going where this is necessary but the possibility of recording more information objectively to guide treatment also helps the process of surrender. The more the doctors can find out without having to bother the patient the better.

The doctors are empowered by this model rather than disempowered. In the case of major decision making, then an advocate may be used to make a decision on behalf of the patient and they would choose how much to involve the patient, how much information to provide. The advocate can be given authority as a check on the power of the doctor. The patient reserves the right to say enough is enough and to withdraw from the treatment or simply to withdraw from the body-surrender model and return to the conventional patient-led model.

This puts the patient in a position where they are able to let go of their body, surrendering their body to the care of others and concentrate on looking after their minds. Not knowing what all the medical options are or all the costs removes the burden of choice or of resentment. They can train themselves to be grateful for what they receive, to relate to the carers as human beings; and the carers can relate to them in their personal interactions with the body matters out of the way, the body matters that would otherwise become the dominant agenda. This way a patient can never become just a body in his or her relationship to the carers, a relationship which must be one of the patient simply trusting the carers to do their best. I believe that the enhanced personal contact that would ensue would in most cases ensure that best care was offered. The patient would not need to relate to the carers so much about their body, and may so remain a human being in his or her own eyes and in the eyes of the carers.

This model acknowledges the reality that often it is the situation that the carers have the knowledge and the power to act; or it becomes the appropriate model more and more where this is the case. The patient has very much more limited resources. This is not a consumer model but a giving model. All treatment is like an offering, not demanded, it is all a gift. This fits very well with national health service provision. And this model could be an explicitly available option for a particular patient or care situation, rather than an imposed model.

A holistic model of care can be used in either case, 'patient led' or 'body surrender', but is particularly useful in the latter to allow carers to take over more aspects of a patient's care. This model could apply equally to people taking part in their own care that they surrender to the advice of the professionals.

This removes the false sense of a person having a right to whatever care they might want in a situation of limited resources. It removes the false sense that they are in control of a situation that they are not in control of at all. It allows professionals to make difficult choices without the added stress of a patient's resistance, in fact knowing instead that the patient is willing to accept their judgement. The advocate will have the role of shielding the patient from the dominance of the doctor in this case.

This would be recommended as the model for a good Buddhist to follow, or for the good Buddhist to represent within a health care system both in terms of the patient and the professionals. So the professionals would be encouraging their patients to let go and yet at the same time making sure that they continue to offer the best care they can. The standard of care offered can of course be monitored as usual, but not by the patient wherever possible. So the patient is removed from the situation of trying to motivate the carer, and the professional is not pressured by the patient either but can come forward with their best effort.

At the least to simply portray this model acts as a balancing voice to the patient led model. It opens up the whole range of possibilities to choose from. In a sense the inclusion of this option gives more power to the patient. They have the power to lead, or the choice not to. Both options can be portrayed as positive moves – “I do it”, or “I trust you to do it for me”.

This model can also reserve the right to refuse treatment at any time as another gesture of letting go. You let go into the treatment, or you let go and refuse or turn away from the treatment – from the spiritual perspective these can be the same. What we do not do is to demand treatment. To fight in this way can merely become the fight to try to claim more resources than the next man or woman, to being compelled to fight for life like a soldier might but in the doctor's office rather than the battlefield.

We can assume that to fight is empowering but to trust and let go can also be truly empowering to the mind. We are empowering the spirit which in turn naturally empowers the body, rather than looking for power from our animal instinct and from the body which in the case of serious chronic illness ceases to give us reliable information or to react in appropriate ways: The body is adapted to react to acute trauma, not to chronic illness in which case its adaptation is dysfunctional. The body and its instincts do not know what to do in these situations.

In summary I would suggest that the body surrender model could be the option for the true Dhamma practitioner who finds him or herself in a situation they trust.





I offer this for your reflection

Ajahn Kalyāno 
http://www.openthesky.co.uk



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Recommended further reading:


We suggest Ajahn Chah’s classic talk, “Our Real Home” for more Dhamma in relation to illness and death.

Our human dignity is what can define our very humanity. It can be what raises us from above the animal realm and it can be an expression of our spirituality. Our dignity or honour can be a source of tremendous strength and motivation. Dignified people can be the ones who find it most difficult, of course, to suffer from any indignity, but they can also be the ones whose dignity motivates them to carry on. In difficult circumstances, however, our dignity can still be hard to maintain. In a complex and grave medical situation, it is very important to be sure to make every attempt to obtain clear consent from a patient. Then the baseline in terms of standards of care is often the attempt to maintain a person's dignity for them, both in terms of the level of treatment offered and throughout any treatment procedure.

Human society has, of course, a moral obligation to try to provide a basic level of care to all its members as best it can. I would suggest that each individual can reply to this with an acceptance of what society is able to offer. But then the question asked is: “should we not demand our rights?” Within a prosperous, or indeed greedy, society we must. But when resources are limited it becomes a nonsense to be trying to demand our rights. We may then try to demand our share but when we have done all the demanding we can we still need to come to an acceptance for ourselves.

And then rather the attitude of the wise patient can be to try to maintain their dignity no matter what happens. How might this be done? Is there not something curiously beautiful about the upright stance of the human being? Standing raises us above many animals physically but also is linked to human dignity. We maintain our dignity by 'holding our heads high'. In this way a sense of dignity is linked to that of posture. Our postural or proprioceptive sense has been termed our sixth sense. when we become very aware of our posture and movement it can have an almost mystical effect on the mind for this reason. This sense is also a way in which our body image is formed in the mind, an image free of pain or pleasure – neutral and steady. The body and its pain can in this way be perceived as two different things. In times of pain this image can be a refuge. This is important. To find a mental refuge from pain within the body helps us to stay with it, not to want to get away or to resent the body.

This body image is one of the qualities and one of the fruits of a detached attitude toward the body. This sense of detachment can be well established or an ability to at least detach the mind momentarily or to some degree. Take the example of a situation in which someone is in need of of a gynaecological investigation. For the patient, so exposed, to look away whilst this examination takes place, or to look only when necessary may be a way they can keep their dignity. We can also relate to the body in an impersonal way to encourage detachment, even with a little healthy contempt, on occasion exclaiming, perhaps, with a smile:

“Oh, bodies! Can't rely on them, can we.”

or

“Sometimes bodies can be really disgusting, can't they.”

The mind that acknowledges these facts at the crucial moment can protect its own dignity and there need be no loss of love. At least there will be no loss if the love is real, if it is a giving love. 

Often the great human drama is played out most visibly and hence most powerfully in the life of the stars of film or music. We can see there how strongly certain events can effect our highest values or aspirations. I remember as a child how my father was a great lover of Elgar's music. He particularly loved Elgar's cello concerto. There was a particular cellist, the charismatic Jacqueline Du Pre and her genius husband, the conductor Daniel Barenboim whose rendering of this concerto was divine. My father loved it and I think was a little in love with Jacqueline. Then the tragedy: Jacqueline contracted the neurological disease multiple sclerosis. My father was very sad for her. As the story goes, the couple then separated. Whatever really happened, to my father it appeared as if the husband deserted his wife in her time of most need. My father was devastated. His dream was shattered. To some degree so was mine.

I have no idea what really happened to Daniel and Jacqueline but perhaps the great romance could not be sustained through the indignities of her disease. Perhaps the love if not the romance could have been maintained if her dignity could have been more properly cared for, who knows? This was anyway no small matter for my father, it was the beginning of a big breakdown. I found myself going on to specialise in the care of people with neurological disorders as though I was caring for Jacqueline.

It was in this crucible that I realised the importance of dignity, and the fact that holding it foremost in our minds through difficult times was how our true love and our spirituality could be protected.










I offer this for your reflection

Ajahn Kalyāno 
http://www.openthesky.co.uk


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