What Holds Us Back from Respecting Patient Choices

Over the past 5 years, I’ve talked with and listened to patients and physicians and family members and friends and social workers and spiritual care practitioners and lawyers and politicians about advance care planning and respecting choices. I suspect that planning in advance, may just be one of the most under-utilized tools in healthcare. One thing I know for sure is: the failure to incorporate an Advance Care Planning system into healthcare is a key reason why healthcare providers are held back from respecting patient choices. Joanne Lynn, MD, Washington Home Center for Palliative Care Studies in Washington, DC says: " ... we contend here that the course of care may be determined largely by preexisting routine, that patient-centered decision-making is often difficult to implement, and that improving the experience of patients might be best achieved by changing institutional and professional routines."
As healthcare providers we believe it’s the right thing to listen with respect, and to honour the wishes of the competent patient. In fact, our codes of ethics state clearly that this is an expectation. So, we talk to our patients, give them materials to read—and even include their families in our discussions. But the truth is, in the heat of the moment, when the patient's condition is deteriorating and anxiety levels are high, we often take the path of least resistance and, instead of following the wishes of the patient while competent, we act on one or more of the following voices:
1.the inner voice that tells us over and over again that there is a chance that the optional intervention the patient doesn’t want could save their life
2.the compelling voice of the nurse on the other end of the phone in the middle of the night wanting to send the dying patient from the nursing home to acute care
3.the anxious voice of the family member who isn’t ready to let go of their loved one
4.the memory voice that reminds us of a past death experience that has gone very wrong
5.the urgent voice that doesn’t have the time to find, read, and corroborate an advance directive
6.the frightened and tired voice of the very sick patient who is now going along with whatever the family says.
These voices are often linked with stories from our past, and they can hold us back from respecting patient choices. The patient, and even some members of their family may have planned for a natural death, but we too often find ourselves listening to anything but the patient’s pre-crisis voice.
So what do we know about advance care planning and respecting patient choices?
1. Surveys in the general and elder populations indicate a positive attitude towards advance directives and an interest in completing them.
2. General agreement among health care providers that advance directives are beneficial and desirable; AMA, CMA and CNA endorse advance directives and recommend assisting patients to draft them.
3. CMA Code of Ethics: Respect the intentions of an incompetent patient as they were expressed (e.g. through an valid advance directive or proxy designation) before the patient became incompetent.
4. CMA, CNA, CHA and Catholic Healthcare Association Joint Statement…every effort should be made to ensure that health care decisions are consistent with [a patient’s] known preferences [which] may be found in an advance directive or may have been communicated orally.
5. Accreditation Canada states that hospitals and health authorities are required to ensure the palliative care team informs the client [patient] both verbally and in writing of their right to establish an advance directive, and explains CPR and the potential need for life-support following resuscitation to the client and family, including the risks and benefits.
6. Canadian Common Law supports advance directives. "It should not be forgotten that every patient has a right to bodily integrity. This encompasses the right to determine what medical procedures will be accepted and the extent to which they will be accepted. Everyone has the right to decide what is to be done to one's own body. This includes the right to be free from medical treatment to which the individual does not consent. This concept of individual autonomy is fundamental to the common law … ."[Ciarlariello v. Schacter (1993), 100 D.L.R. (4th) 609 at 618 (Supreme Court of Canada)]
So…we have all kinds of obligations to respect patient choices.
I suggest that if healthcare providers viewed advance care planning not only as routine care, but as punctuation marks in our paragraphs of care, patients and their families would have more clarity around treatment options, and healthcare providers would have an easier time of respecting patients’ choices.