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Ensuring Patients Know Their Choices -- Patient Family Advisory Councils (PFACs) Can Help

Posted by Dr. Lachlan Forrow  October 27, 2013 02:00 PM

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Patients with a serious illness cannot possibly make informed choices about their care unless they know the full range of options available to them.  This requires that they know, in an early and timely way, not only about potentially life-prolonging treatments, but also about palliative care and hospice alternatives.

We know that this doesn't consistently happen.  

We also know that many patients with incurable cancer who agree to potentially-burdensome treatments wrongly believe that their disease is curable.  

We also know that many patients who would likely have preferred to spend their last weeks at home are not referred to hospice until the last 3 days of life (if at all).

We know, too, that having early "end-of-life discussions" with patients is highly beneficial for both patients and their surviving family -- better quality of life for the patients, less "aggressive" medical care, earlier hospice referral, and better bereavement adjustment among survivors.  

So efforts to ensure that early communication takes place more reliably is a no-brainer.

In a major step forward toward ensuring that patients with serious illnesses are informed, in a timely way, of the full range of options for their care, the Massachusetts Department of Public Health recently released its initial draft of proposed regulations to implement a new law passed by the Massachusetts legislature last year.  

The new law has two distinct components, one applying to "health care facilities", the other applying to individual clinicians:

The commissioner shall adopt regulations requiring each licensed hospital, skilled nursing facility, health center or assisted living facility to distribute to appropriate patients in its care information regarding the availability of palliative care and end-of-life options. 

If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate for the patient, including, but not limited to: (i) the range of options appropriate for the patient; (ii) the prognosis, risks and benefits of the various options; and (iii) the patient’s legal rights to comprehensive pain and symptom management at the end-of-life. 

The first public draft of the proposed regulations has many good ideas, and helpful suggestions for making them even better are beginning to come in, starting with discussion at the Massachusetts Public Health Council meeting where the proposed regulations were presented.  Major health care organizations and networks, including the Massachusetts Hospital Association, are encouraging their members to submit suggestions in writing, and/or to attend the planned Public Hearing about the regulations on November 21 at 2pm.  

The crucial issue now is not whether to "reach out" -- the first of the "4 R's" of respecting patient's preferences -- to patients with the information they need to make informed choices. Health care facilities and individual clinicians will now be required by law to do that.

The crucial issue is how.

For this, we need the input and expertise of patients and family members themselves.

Fortunately, in Massachusetts we have a wonderful mechanism for this that already exists -- the Patient Family Advisory Councils (PFACs) that, as required by law since 2010, now exist in health care facilities across the Commonwealth.  As stipulated by law (see Section 11/53E here), PFAC's have multiple potential roles:

The department shall promulgate regulations for the establishment of a patient and family advisory council at each hospital in the commonwealth. The council shall advise the hospital on matters including, but not limited to, patient and provider relationships, institutional review boards, quality improvement initiatives and patient education on safety and quality matters. Members of a council may act as reviewers of publicly reported quality information, members of task forces, members of awards committees for patient safety activities, members of advisory boards, participants on search committees and in the hiring of new staff, and may act as co-trainers for clinical and nonclinical staff, in-service programs, and health professional trainees or as participants in reward and recognition programs. 

A "free bonus" of PFAC's engaging actively in helping hospitals (and other health care facilities where they exist) implement the new requirements is that each PFAC is also required by law to submit, by October 1 of each year, a report on its activities that is publicly available.  These reports, compiled and readily available with much additional useful information by Health Care for All, allow health care facilities to exchange ideas and evolving "best practices".   

As Ellen Goodman, co-founder of The Conversation Project, regularly emphasizes, improvements in the experience of childbirth were not driven by doctors and hospitals, and the successful experience of how those improvements happened needs to be applied to the improvements we need in care at the other end of life.  Addressing the lay public, she stresses that the "experts" we need to drive change are not "professionals", they are you:

...This change has to come from the outside in. It comes from known experiences that you are the expert on. You are the expert on your family. You know what happened to your parents, to your siblings and that you have to bring this change into the system.”

The model is similar to how women changed birth a generation ago. The doctors weren’t the ones that said, “Oh, yes please. Bring the video camera into the birthing room. Let’s have babies in a bathtub. Don’t put your feet in the stirrup. Let’s have a warm and engaging lovely event.” It was basically parents, especially women, who said, “This is what’s right. The experience that I had giving birth shouldn’t be that way.” They’re the ones who changed the system from the outside in.

We think the same thing is happening with the end of life experience.

So yes, I hope health care professionals will weigh in for the November 21 Public Hearing on the new regulations.  But what we need most of all -- not just leading up to November 21, but forever after -- is the voices of patients and family members themselves, telling us how they would like to be informed, and then regularly afterward telling us how well we are (or are not) doing.

Engaging Patient Family Advisory Councils is just one tool that can help.  We also need to engage faith communities, disabilities organizations, AARP, and many others.  But since the structure of PFACs already exists, with direct influence on health care organizations "from the outside in", they are a good place to start. 

This blog is not written or edited by or the Boston Globe.
The author is solely responsible for the content.

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About the author

Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »

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Learn why and how to start discussing end-of-life wishes with your family. Join The Conversation Project.


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