Jane Brody’s recent article on advanced healthcare directives in the New York Times gave voice to something I’ve been wondering for a long time. These forms have gotten increasingly complex over the years. I know because more and more friends, relatives and relatives of friends are sending them to me to review. Can anyone who is not a trained medical professional really understand what they mean?
I’m not talking about the language. The forms might be written in painstakingly clear prose such as “I would only choose to be on a ventilator to treat a reversible illness.” But who really knows how long a “reversible illness” might take to improve? What if the patient, while undergoing treatment for pneumonia, develops a complication or a different illness that is not reversible, e.g. kidney failure?
It is for this reason that professional consultants are now cropping up to help interpret the forms-to match the written words to the stated wishes of the patient. As the article points out, these services are pricey, an estimated $1500 per consult, more than a lot of folks pay for wills.
Healthcare directives are definitely an improvement over the days when the options for patient input were limited to whether to make someone a DNR (Do Not Resuscitate) or not but there is no such thing as a failsafe roadmap to end-of-life decisions. There are just too many variables for any one document of any reasonable length to cover. There is no substitute for thorough and repeated communication between physician and patient and/or a patient’s family to ensure that final wishes are met.
At the End of Life 
M. Jane
August 14, 2012
Catherine, as an RN who has been involved in advance care planning and healthcare ethics for 25 years I believe having a consultant, coach, or someone who can facilitate the conversation and help the individual get written down what is their intent is very important. I have seen the confusion you reference in definitions of terms. I have been at the bedside of patients who have had durable powers of attorney and the individual identified had no idea there name had been used. Needless to say they can’t carry out the role.
Integrating the players involved from the physician, who should be the lead but is frequently too busy to devote the necessary time, to the patient, family, friends, clergy, clinic staff, and others. Each individual’s circumstances can vary so vastly that the tools that are out there today should be considered guidelines that usually require interpretation and always require discussion and integrated communications. Once “the conversation” has taken place, the documentation can begin. Thanks for your thoughts, I too was surprised by the cost noted in the article but when I better understood what they were providing including follow-up and bedside consults it did not seem as onerous for those who have that level of need. I and others who assist people in this area have lower fees to cover having the conversation and preparation of the documents. I also do a yearly follow up.
australianpalliativecare
October 2, 2016
That is interesting, I am not aware that we have consultants here, I think it would be necessary for them to be completely independent of the palliative care industry and of the health service. I do know that here one cannot get an enduring power of atterney without the identified person signing to say that they are aware, willing and capable.
https://australianpalliativecare.wordpress.com/2016/09/30/advance-care-directives-and-advance-care-plans-dont-be-pressured
M. Jane Markley
October 3, 2016
Australian/palliative, Yes, independence from the healthcare system is helpful although not required. Glad your DPOAHCs must be signed by the healthcare agent. It is most helpful that it is mandated. Ours are frequently completed in a lawyer’s office and the agent is not there so can miss the conversation.
Eleanor, Kaiser is doing a great job of moving forward with advance directives. Keep up the great work.
Eleanor Vincent
November 21, 2012
This is an important topic. Nonprofit health care organizations such as Kaiser Permanente (where I work in Health Education) do offer classes to assist people in understanding and completing advance directives. This is free or very inexpensive and while perhaps not as hands on as a consultant, much more accessible to the average person. As you point out, having the conversation (over and over) with your loved ones is the key step.
Catherine Musemeche
November 21, 2012
Sounds like a worthwhile service. Thanks for the excellent comment.