As we draw to a close the discussion on funding, I would like to spend a moment on the private person –
- What is their motivation?
- When they may need to find and fund something other than orthodox?
- Where are they to get their information?
- Is formal research even thought about?
Regardless of how ‘good’ as patients, and how diligent they may have been in following all the oncologist has said to do, there may come a time when they want more (as Crystal et al states – there are many reasons to trial CAM; relieving symptoms at about a quarter of those surveyed, and to increase quality of life (around 50%).
This surely shows that not everything is provided within western medicine, or by the oncology team. (Looking at the unmet needs again – what is even the definition of the scope of practice for medicine?)
As we are now thinking funding – is this more a life choice issue – some like green curtains, others blue and some prefer double glazed windows and no window coverings? Is quality of life even a medical issue?
Most in the Crystal paper seem to have decided they need to know more than they are getting from medicine and went looking. 21% information being provided by other cancer patents themselves.
According to Crystal only 3% on the net – (as we have discussed, no doubt a very larger figure 9 years on). Also as a function of time moving on, many more may have already started a relationship with at least one CAM provider before diagnosis. In the Crystal paper, 35% had been using CAM (whatever this means) prior to their cancer treatment.
We are asked to decide what role (formal) research would take. This may be of grave concern to the public funder, and much less so for the dying patient.
As Coulter and Willis state (2004)
“One response within medicine has been an increasing call for CAM to be subjected to the same rules of evidence that are assumed to be held for medicine,19 and the same methods of evaluation as those for clinical competence and safety.20 A more radical position is that there is only one kind of medicine that has empirical support, and that until CAM can demonstrate such support it should not be considered complementary or alternative.21 To date, there is simply not enough “scientific” evidence to accept or reject most CAM. Further, this lack of evidence seems to be having little impact on the growing use of CAM”.
- How does a desperate patient or family member evaluate who/what to listen to?
- Does the cancer patient even care?
- Is health just about the person’s physical body and its bits?
Most CAM providers see a whole unit and any disease is a result of an imbalance often very far away from the area that is under attack. Most patients know that they, and their lives are hurting.
Perhaps a more temporal approach, a calming resolution of their woes may be needed now.
- Where to go?
- Are we calling anything not offered medically as CAM?
- Prayer, touch and pastoral care are to be CAM?
This unmet need may well be addressed by the many CAM providers, who as part of their caring service, spend a much larger chunk of time with each person (and often touching them). As Ian stated in lectures – 10 minutes allocated in the States for a doctor’s visit. I suspect it is around 5 – 7 minutes in Australia).
Perhaps the average searching patient understands that there is more at stake than their disease and whether it is ‘cured’ or not.
They may then be less concerned about the science and data and more interested in getting care.
- What is the role of the various professional players?
- Is it that we have given too much weight to the oncologist, whose job it is to simply kill the cancer?
- Do we need more players in the team?
- Is there a point when the patient needs to take charge and own the healing?
- Is survival and cure of cancer all about their body, or is there room for them to do empower themselves in their life?
- Is medicine the only tool, or is it just part of the puzzle to be assembled?
- Is formal /scientific research where the answers to this will be found?
“As suggested by Kaptchuk and Miller, (from Parker, 2007,) some “threads of commonality” between CAM modalities are perceptible [10]. These include: validation by slow accretion and interpretation of experience, often in the context of canonical texts and teachings; individual and subjective attestations of efficacy, and (not always, but often) a belief in a vital natural or supernatural force or power, mediated through the healer’s ministrations [10]. Further links include an emphasis on natural as opposed to artificial processes and medicines [4: 595], and on holistic care, whereby 8 Bioethical Inquiry (2007) 4:7–19 all levels of personal health are considered [4: 595–6, 11], overcoming the perceived obstacle to cure of biomedicine’s mind-body dichotomy [12]. A partnership model of care is widely supported, with a claim of greater power afforded to the client than in orthodox doctor-patient relationships, despite a shift in this context in recent times [12]. Alongside this equality runs the general claim that CAM assessments and interventions are attuned more to health than to illness, which has been the traditional focus of orthodox medicine [12]”.
If we want research to help with this, how can we get the research to focus on the whole person? (Parker, 2007) “As Bensoussan has suggested, CAM includes those practices whose central theoretical explanatory frameworks are inconsistent with currently accepted scientific explanations [13].
Haigh, who describes alternative medicine as encompassing “a diverse set of holistic therapies, tending to emphasise the integration of body, mind and spirit,” also states that at its most basic, CAM “is generally perceived to run counter to the positivism and empiricism of western science, involving radically different epistemologies” [14]. CAM is therefore non-scientific, in the broadest sense”.
The individual understands this. They must – as where is the research that the Crystal respondents used prior to taking supplements or whatever they were doing? Word of mouth from someone they trusted?
To rethink ‘what intervention’ may be as individual as a person. Most CAM practitioners and definitely acupuncturists do not treat cancer – they treat the person with the cancer.
To be specific here, – how long to treat a person? This is the appropriateness of care issue. This will be totally individual. To use the baby in the case (Simone’s story) I mentioned online, she saw me twice daily for eight weeks – that is around 90 minutes twice a day – no breaks. She was also seen directly by the Reiki ‘channel’ at least weekly and had ‘absent’ Reiki healing most days. In cost this adds up to a lot – in today’s prices. (If we had charged full price – and it was 1987).
In today’s prices, add at the very least $100 per session (2 daily) with Reiki at least $80 a session and we are looking at substantial costs – the Crystal paper is not talking ‘real’ CAM service as oncology alternative.
This is then way outside the amounts quoted there – of the average cost being $NZ102. Those answering the survey were using CAM as an adjunct, not the main event.
This is a case of a dying baby with no possibility of oncology treatment. Supplements to add to her formula would have come in under $100 for the two months. Her father traveled 25 k one way to see me – four trips a day no breaks in eight weeks. She was almost in remission after that time, from being born – about to die. What price a life?
- $11,600 acup,
- Reiki, ?$1200,
- petrol $??
- Supplements $100.
- Oncology costs and nursing for a baby that young?
- Costs?
I have no idea, but it would have been more than the today’s priced alternative was and would not have had the same result – I thought she was to be palliative, and instead she was almost in remission two months later.
The treatment with me had not finished – but the hospital then took her away to start oncology – although the drugs kill rapidly growing cells (her nervous system/ brain). At the rate she was getting better it would have been no more than another month I suspect till we would have had her well and stable.
This is not a standard situation – totally alternative as there was nothing orthodox offered.
- No research for me to follow to know what to do.
- No research for dad to follow to decide to do it. Just hope.
- How did he decide?
There was nothing else and he couldn’t accept do nothing. - Did he bother about money?
This is totally outside the funding issue, yet it is about that – what price a life?
This may well be the situation for many of those I have outlined below – not instead of orthodox but when orthodox has no further answers.
What category does the patient we are about to fund publically fit into?
1) – Very few are brave or perhaps have researched sufficiently to be in this category (or are like this newborn – no medical care possible) – Choosing to go alterative entirely rather than mainstream.
2) – Have they gone as far as they can in orthodox cancer treatment and are out the other side, apparently ‘clear’ – now living in waiting mode?
3) – Are they wanting to maximize their oncology treatment with what may assist them with side effects, quality of life and staying as well and happy as possible?
4) – Are they in remission and want to stay there?
5) – Have they been discharged, either in the midst of, or at the end of orthodox oncology treatment, as being no longer well enough or able to have the therapy and are now waiting to die?
6) – Are they in palliative care mode, either with chemo/radiation as palliative, or are beyond this and waiting to die?
At each stage the needs of the patient will differ.
Of course they want the best quality of life, and the longest life and with as little disruption to what they believe to be what they are entitled. Stepping aside from the public funder’s policy decisions at work and what research they will help them decide what to do, (and we keep hearing of how little funding has been allocated to CAM in general, so it would be possibly be very sparse), the patient has very limited time left, the patient is likely dying.
How do they make decisions? What research do they listen to?
I would suggest they will go where they have before to get answers. It is not likely to be the medical profession as they may now have exhausted all medical options.
Are the life choices needed now seen as being medical? How do we define medicine? Where is the research for the person to know what to do when it is not medicine? They probably ask their family and friends and someone will know someone.
Perhaps the debate could move to what is appropriate care, rather than which medicine? Perhaps we need to look to a situation “… when the right patient gets the right care at the right time for the right condition and from the right provider.”
References
- Chrystal, K., Allan, S., Forgeson, G., & Isaacs, R. (2003). The use of complementary/alternative medicine by cancer patients in a New Zealand regional cancer treatment centre. The New Zealand medical journal, 116(1168), U296.
- Coulter, I., Willis, Evan., The rise and rise of complementary and alternative medicine: a sociological perspective, Med J Aust 2004;180 (11): 587-589.
- Parker, M. (2007). Two into one won’t go: Conceptual, clinical, ethical and legal impedimenta to the convergence of CAM and orthodox medicine. Journal of Bioethical Inquiry,4(1), doi:10.1007/s11673-007-9031-z