Wednesday Nov 19, 2014
Don't Wait: Advance Planning Helps Both Patients and Their Caregivers
Not long ago, while overseeing residents in the hospital, we admitted an elderly woman who was bed-bound and oriented only to herself. In the past, she had clearly indicated to her paid health care proxy (she had no close relatives or friends) that, in the event of an emergency, she would "want everything done" for her, including cardiopulmonary resuscitation (CPR). However, she had also gone to great lengths to have home care 24 hours a day, seven days a week to avoid ending up in a long-term care facility. Her wish was to pass away at home.
On one hand, the team was grateful that she had delineated her wishes regarding resuscitation. With an underlying heart problem and an infection of unknown source, it was reassuring to know what to do medically if her heart stopped. However, her strong desire to pass away at home and not be consigned to months of lying in an unknown bed in a strange environment presented us with a dilemma. We knew that if resuscitation was needed -- and if it was successful -- the likelihood of her spending the rest of her life on a ventilator in an ICU bed was high. How could we reconcile what seemed like two disparate wishes for this woman, given that she was no longer able to have a meaningful discussion about her preferences or give us consent?
Without a doubt, the ideal is to have conversations about end-of-life care in the outpatient setting, before a serious illness -- accompanied by heightened emotions -- demands it be done in the hospital. As family physicians, we are particularly well poised to lead these discussions. Not only do we have a holistic view of our patients' medical conditions, we often know a great deal about their social history. Furthermore, we frequently care for multiple members of a patient's family. Despite not knowing exactly what might lead our patients to need a resuscitation decision, we do know that for many of our elderly patients, they (or their families) will be faced with this decision at some point.
What can we do to facilitate this decision-making process? Ultimately, we want our patients to be able to make informed decisions about their care, including those that occur at the end of life. However, this is not a light subject, and the conversation is typically not one that can be had in a few minutes. Although some patients have done a good deal of research about health care proxies, advanced directives, do not resuscitate (DNR) orders, etc., most have not.
In fact, a survey of U.S. adults(www.ajpmonline.org) published earlier this year found that nearly three-fourths of respondents did not have an advance directive, and lack of awareness was the most common reason.
Broaching the subject during a routine visit can be helpful. I begin by saying that I know this can be a difficult topic, but, as their family physician, I like to have documentation on file regarding how they would like to be cared for in the event of an emergency. (Of note, our electronic medical record has a place to document information about health care proxies and advanced directives.) I ask my patients if they have ever thought about this issue. And then I ask them if we could set up an appointment specifically to discuss this in more detail. I reassure them that I am not bringing this up because I foresee any emergencies in the near future, but expressly because I believe it is better to discuss end-of-life care before we arrive at that point. I encourage them to bring a spouse or family member to the appointment.
When discussing these topics, it is important to create a space where patients feel they can safely consider their options. But it's also essential to be forthright with patients about the pros and cons of those options. Most patients' idea of what occurs during and after resuscitation is the Hollywood portrayal. Conversely, an overwhelming amount of physicians, who have a more realistic understanding of CPR and its aftermath, choose to fill out DNR forms for themselves.
I try to give a clear idea of what resuscitation can and cannot do for a patient in simple language, and I focus, in particular, on what happens after the resuscitation effort. I explain that often, when the heart stops, if the medical team can make it start again, whatever caused it to stop will still be there. Sometimes, depending on the patient and if it feels appropriate, I tell them that ribs can be broken. I let them know that patients generally go to the ICU afterwards with machines and tubes helping them breathe and maintain their heart function, and that it is not unusual for the medical team to be barred from turning off the machines and tubes after they've been put in place, and patients may be dependent on these going forward. Even if the medical team is able to remove the additional support, I explain that patients rarely return to the same quality of life they experienced before the event.
I find it helpful to frame the discussion with patients in terms of "allowing natural death" rather than "do not resuscitate." And I stay away from asking if patients would "want everything done" in the event of an emergency, because to answer "no" to that question feels as though you are saying you want nothing done, and that is a scary (and inaccurate) option. I reassure patients that a DNR order is not a "do not treat" order, and we discuss all the options they would have for being treated for infections, pain or discomfort, and so on.
In terms of the practical details of scheduling appointments to have these discussions, the 2015 CPT code set will include two codes for advance care planning, They are
- 99497 -- Advance care planning that includes the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed) by the physician or other qualified health care professional for the first 30 minutes, face-to-face with the patient, family member(s), and/or surrogate; and
- 99498 -- Advance care planning that includes the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed) by the physician or other qualified health care professional for each additional 30 minutes (list separately in addition to code for primary procedure).
Currently, the 2015 Medicare physician fee schedule will not reimburse for these codes. They are not valid for Medicare purposes, and CMS indicates that Medicare uses another code for the reporting and payment of these services. CMS does plan to review and consider payments in the future. Until then, physicians can bill for the visits using regular evaluation and management codes and code based on time spent in counseling and coordination of care.
It's worth noting that the AAFP has a comprehensive policy regarding advance planning for end-of-life care, and FamilyDoctor.org(familydoctor.org) offers related resources for patients. In addition, American Family Physician has compiled a collection of journal articles that deal with issues related to this topic, including advance directives, pain management and hospice.
Ultimately, our elderly patient in the hospital stabilized and returned to her baseline after we identified the source of her infection and started the correct antibiotics. At that point, the resident and I were able to have a rational discussion with her health care proxy, who was one of her main caretakers. We met in the patient's room to allow the proxy to ask the patient questions throughout. Although she was unable to repeat back risks and benefits of and alternatives to various treatments or discuss her wishes directly, she was able to answer "yes" and "no" to basic questions about CPR, life support and, importantly, whether she would want to be in a hospital for an extended period of time.
Although the patient didn't have the capacity to understand what CPR would be like for her, she was able to indicate she wanted to be at home and she did not want to have her life extended on machines. This gave the proxy and others who cared for her the opportunity to consider what they thought would be best in line with what the patient would choose for herself if she had capacity. And, as physicians, that's what we hope to accomplish for all of our patients in these situations -- knowing how to care for someone at the end of their life in a way that is truly consistent with their wishes.
Margaux Lazarin, D.O., M.P.H., provides comprehensive family health services, including osteopathic manipulation, at a community health center in the Bronx, N.Y. She is actively involved in teaching residents and medical students to deliver evidenced-based care to underserved communities.
Posted at 02:46PM Nov 19, 2014 by Margaux Lazarin, D.O., M.P.H.