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
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.”
“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
The Buddha's teaching is often understood as describing phenomena not as entities but as an interconnected weave of related things where there is being but no independent self. To see like this is certainly a shift of view in the right direction. But if we can see deeper and view all things as truths or dhammas, then they are things no more. There is no being, only knowing. Things are not then relational in any mechanistic way. They are information or meaning, true or false, right or wrong. They relate more as a dialogue or debate. Taking birth in a human body will naturally generate the same debates within the mind of different people, which form actions and their consequences. They are expressed and feed back into the culture, into a greater mind. The repeating patterns of information constitute a kind of rebirth over and over in different people. Strong perceptions will be formed that dominate thought within any particular culture. Just as the information in our genes can be passed on from one person to another, so can these cultural or religious truths.
If we start to think in these ways it can open up our minds to other possibilities of life after death.
What about the ultimate possibility? When the Buddha is asked about what happens to an arahant after death he says 'existence does not apply, non-existence does not apply.' What could this mean? If the mind finds an abiding in emptiness then it does not exist but is not annihilated either. In another sense this also applies to information or truth. The truth of something is not the substance of it so it does not exist in this way and yet it is real. When the mind sees the truth it can enter and abide in emptiness. This is how the transcendent mind is part of nature – or we might say it is and it isn't. Within the mind there is no knower or known there is only knowing.
When this knowing is raised to the level of wisdom and results in the experience of samādhi this is no different. The space of samādhi is empty, there is nothing there. The brightness of the emptiness can fool us that there is a being there, a Knower, that we have become something or found our true nature or Buddha-nature through samādhi. The Thai forest tradition calls the Buddha the 'One who Knows' but that need not suggest a being. The eternal Buddha is not a being but is the result of an eternal knowing. So whenever this brightness arises in the mind we must not grasp it, either as an experience nor by way of an idea, but shine it on the world. If it arises within the breath we can shine it into the body. This is the way to the ultimate for 'here in this fathom long body lies the beginning and the end of the world' (AN 4.45.).
I offer this for your reflection,
It is often only when we are dying that we begin to reflect on the big questions, looking for the meaning of life or for meaning in the ordeal of our last days to give us new life. Stephen Jenkinson, coming from a background in Theology, worked as a counsellor to dying people for over twenty years. He writes:
“Suffering, learning how to suffer, is how you make meaning out of what seems random, chaotic or pointless...Meaning comes from this kind of wrestling (with life).” ('Die Wise' by Stephen Jenkinson, North Atlantic Books p. 113.)
The fact that holds the greatest potential to change that meaning is the fact that we will all die:
“Dying (or the fact of dying) changes what life means if you are willing for it to be so.” ('Die Wise' by Stephen Jenkinson, North Atlantic Books p. 91.)
We could say that this willingness is the essence of the Buddhist path, the contemplation of impermanence. The Buddha urges us not to wait until we are dying but to begin this enquiry earlier in life, seeing in it the potential for liberation from suffering. In the worldly way of desire, searching for what we want, our purposes in life is what gives it meaning. If we feel we have no purpose then life is meaningless. In the spiritual path meaning becomes purpose. We see the world in a different way and this view in itself is what drives us. There is no purpose in the same way, we are following an internal compass – our conscience, rather than an external one – our desires. Or we begin the spiritual path by looking outside, but if we focus on our desires we can lose sight of the realities of the world, Stephen Jenkinson writes simply:
“When you focus on how you feel about things in the world, then the things of the world slip from view.” ('Die Wise' by Stephen Jenkinson, North Atlantic Books p. 367.)
In addition to the conscience our body is a source of wisdom. The body will always tell us the truth, the mind will always delude us. And what then is the truth of the body? Death is the truth of the body. See that with a peaceful mind and you will see the deathless. This can all sound a bit heavy but the experience is actually the opposite, it is extremely light, let's play:
He entered the room, both literally and metaphorically. He had become a symbol unto himself. There was a profound meaning in every gesture and movement and yet nothing was out of the ordinary. In fact he was more grounded in normality than ever before. He truly, simply knew his own body as a body, right down to the very bones. Yet it was as if this experience were the word of the Lord from on high. How so? Death was there in full sight yet there was no fear, no grief or longing. There was peace and joy, freedom of heart. Such was the message, just this. It was enough. It was the end of suffering.
Then the more we look at the world with the body in mind is such a way, the more the barriers begin to break down between one kind of phenomena and another within our experience. We realise that we had been experiencing the body as a self and that this had been defining our relationship to the world. It had been defining what in the world was me or mine. Without this sense of self entering in to all our perceptions we see the world in a more impersonal way. This is very beautiful. We form a simple, unified picture in which we can feel at home, in which we can, in fact, find our real spiritual home and the true heaven, right here in a transformed experience of the world. This is mindfulness coupled with wisdom.
Try this picture: The mind is both the giver and receiver of meaning, of true life. The greater mind is the unity where all the layers of meaning can come together. The earth is to us like the greater body: we can see a greater mind that forms out of the meaning inherent in the Earth. Perhaps we can think of an ancient stone carved with runes as a meaningful and sacred thing; yet every stone has its meaning, carved into it by the wind or the tides. This meaning is the sacredness and true life of that stone just the same as the true life of the mind lies in the meaning or truth it contains. But is a stone really alive?
We can unconsciously also be defining what we call life as having a self, as having some independence and control over its destiny. However, the belief that we are somehow in control of our lives is an illusion (this is the truth of 'anattā' in Buddhism). This illusion is usually only exposed when we find ourselves no longer in control, even of our own bodies and minds and we panic. Actually the body teaches us that our relationship to the world, to our minds and to our bodies is the same – this is the essence of their unity, their shared meaning. Within this relationship there is an automatic process going on that we can and must guide, as best we can, in the right direction. And through this process life needs to 'break us in' for us to grow up and enter into a true relationship with the world where we wrestle with life; where life can guide us as we guide our life between those stones.
And the superficial meanings of time and place will arise and pass away but the deeper meanings will live on as the giver of new life – life in Dhamma. If we can see and experience meaning as life then we can follow a universal meaning through the universe. For there are truths we can ride on that need no eyes to see them or hand to write them down. There are truths completely within the mind that can talk to each other, see each other. These are the stuff of heaven and beyond.
I offer this for your reflection
The experience of samādhi can be clarifying or deluding. If we can keep our perspective we enter into a more spacious, unified experience of life. Samādhi becomes a space that our experience of ourselves can open into. Our experience of thought or feeling is no longer confined to the body.
If, however, we grasp at the space in some way we can get lost. We can simply become spaced out. We can be indulging in the sense of space to the point we lose our mindfulness.
A deeper illusion is that we take the space to be something. When the mind enters space it goes bright. This brightness can seem substantial, when it is actually empty. This is a much bigger mistake than it may seem. It can be very difficult to see anything wrong in our experience, it is so pleasant we fall in love with it. Yet if we thus see samādhi as something arising rather than something ceasing this points us in completely the wrong direction. We will see samādhi as something we generate rather than the result of letting go. We will not be able to open to the experience but instead be grasping and closing down the very space we are looking for.
If samādhi arises more strongly we experience brightness arising in a particular pattern. This varies from one person to another. What we are seeing is the result of the hindrances lessening or ceasing. The different experiences of samādhi represent the slowing down or stopping of the hindrances – or ultimately their complete reversal.
If, for example our experience of the hindrances is like a darkness rising up through the body then when this slows down then we will experience the opposite, a light coming down to us from above. We might mistake this to mean that we are opening to an energy from above, from heaven, and we end up looking in the wrong place for the source of this brightness, we are led away from it.
When the hindrances cease we will experience a stable brightness. This we could mistake to be our eternal soul (I describe this illusion in the poem and picture series ‘Rain from heaven’).
When the hindrances are reversed, brightness rises from below in the place of the darkness and we have truly overcome the hindrances and turned the mind over. We are filled with a light where there is no sense of self. We are free of the illusions that get us stuck. This experience arises out of insight or Knowing. So there is both clarity as to the external world and as to the empty nature of the mind. We realise there is no need to be anything and the Knowing mind is free. We have glimpsed the ultimate.
I offer this for your reflection,