CAM and Advance Healthcare Directives

Disclaimer: This topic strays outside my area of professional expertise, so I offer these personal musings as food for thought, not in any way as official recommendations in my role as a veterinarian.

It has become quite common these days in the United States for people to complete some form of advanced directive for health care or living will. The format and legal implications of such documents are regulated by the states and vary across the country, but in general the intent of an advanced directive is to express your wishes concerning the care you do or do not wish to receive if you are unable to make healthcare decisions for yourself, particularly in cases of terminal illness or long-term incapacitation. An advanced directive also often appoints someone to make healthcare decisions for you in accordance with the guidelines you develop in advance.

The usual subjects addressed by an advanced directive include life support care, such as mechanical ventilation and artificial nutrition, as well as palliative care such as pain control. However, it occurs to me that a common circumstance in which alternative medical therapies are employed is that in which there is no curative or definitive scientific therapy available. People reach for the implausible or the bizarre when they are desperate and unable to accept the limitations of scientific medicine or the inevitability of death. This is the kind of circumstance one might expect when someone is facing the end of life or a permanent incapacitation.

There are certainly advocates for integrating so-called complementary and alternative medicine (CAM) into hospice care for humans. And the nascent veterinary hospice movement has advocates for the use of all the usual alternative approaches as well as such truly bizarre methods such as those of pet psychics. It is difficult to know how widespread the use of CAM in the terminally ill really is, but with the growth of quackademic medicine, it seems likely that family members or other responsible agents for terminally ill or incapacitated patients who are unable to make their own healthcare choices are likely to be offered CAM therapies as part of the palliative care package.

For those of us who doubt the value, and sometimes the safety, of such approaches to medicine, it might be worthwhile to consider addressing this possibility in our advanced healthcare directives, as well as discussing it with those who are likely to be making medical decisions on our behalf should this become necessary. As the horror of the “Gonzalez Regimen” study illustrates, alternative approaches to serious disease can be more (or less) than simply ineffective. They can actively worsen the suffering of terminally ill patients. If the purpose of an advanced directive for healthcare is to protect oneself from unwanted treatment, and presumably the attendant suffering, then CAM is a group of treatments one might wish to protect oneself against.

One difficulty with addressing alternative therapies in an advanced directive would be defining them accurately enough to be useful to providers and family members making treatment decisions. Alternative medicine can be tricky to define, and one must be careful to distinguish between nonsense therapies that are either untestable or have already been falsified, and the kind of plausible therapies with limited supporting evidence that are sometimes the focus of clinical trials sought out by the terminally ill, or that are used prior to definitive scientific evidence concerning their safety and efficacy under “compassionate use” rules. The best approach might be a general definition with a list of examples, which would provide at least some guidance to decision makers. My own advanced directive contains the following statement:

I specifically refuse any treatments in the general category of “alternative medicine” which have not been validated by appropriate scientific research, including but not limited to the following: acupuncture, chiropractic, homeopathy, reiki or therapeutic touch, traditional Chinese Medicine therapies, Ayurvedic therapies, naturopathic therapies, and dietary, herbal, or nutritional therapies not supported by substantative clinical research evidence. This is not intended to exclude experimental therapies used within the context of properly regulated clinical trials or compassionate use guidelines at the discretion of my appointed healthcare agent.

This is undoubtedly an imperfect statement, and probably painfully imprecise to the ears of any lawyer, but it conveys the gist of my wishes, which is as much as such a document can be expected to accomplish.

I don’t intend to suggest that the use of CAM therapies is as pressing an issue for the terminally ill or incapacitated as questions of how intensive and prolonged life-support measures should be, or how we should palliate the discomfort of the dying. But despite the widespread presumption that such therapies are benign at worst, and possibly even beneficial regardless of the evidence, the reality is that unproven or clearly bogus alternative treatments can be harmful. They can harm patients directly, and they can provide false hope or a mistaken sense that the patient is being properly treated, which can interfere with the use of truly effective palliative therapies. In light of this, it seems worth considering the issue of CAM use when planning for the possibility that you may someday not be able to articulate your wishes concerning the care you are given.

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3 Responses to CAM and Advance Healthcare Directives

  1. Alison says:

    And people might also wish to consider a similar directive for their animals, if they are ever in the care of others. Last week my pony became ill with a serious and fatal illness while I was away from home. Luckily, those looking after him made the right decision and called out a vet who was able to administer painkillers and a sedative, and then to euthanase him once I had been contacted to give permission. As you can imagine this was already an appallingly distressing thing to happen: had I thought that those in charge of my pony might have been messing about for hours with homeopathy or rescue remedies while he was in agony with a paralysed gut it would have been intolerable.

  2. Rita says:

    Oh, Alison I’m sorry to hear this sad news – and you’re right, when one’s animals are in the care of others, one needs to know they are receiving effective treatment. We have a horse cared for by others very “into” “alternatives” and I keep a good eye on them in this respect. My sympathies to you.

  3. Rita says:

    I should add that the vet employed by these people is a highly respected faculty member at the University Veterinary Clinic – she just happens to fancy aromatherapy and animal communication techniques as well – go figure! It’s getting ever more difficult to find vets who don’t lean in dodgy directions, it seems to me.

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