"So, Mr. Oldman, you’re 65, and you now have Medicare coverage. Let’s talk about what you want when you… you know...when you get to the end of the road.” This is an imaginary conversation opener, but it touches on reality. Right now the only time physicians can get paid for what is surely one of the most important (and difficult) discussions in a patient’s care is at the "Welcome to Medicare” enrollment visit, the least likely time the topic is high on either person’s agenda.
That will change in January 2016 if a proposed Centers for Medicare and Medicaid Services (CMS) rule goes into effect. The proposal is part of an annual update of Medicare’s physician payment schedules. The final rule will be published Nov. 1, and it will include the fees a physician or other professional member of the care team (probably a nurse, physician’s assistant, or social worker) will be paid for each of two advance care planning visits.
A similar proposal in the original Affordable Care Act legislation was derailed by spurious accusations about "death panels” denying care to older people. Some doctors already have these conversations, but payment may be an incentive for many others. And where Medicare goes, private insurance typically follows.
The discussions will be voluntary; predictably some people will opt out, but many others will welcome the opportunity to talk about their wishes if they have an advanced illness. Sometimes their wishes may be general: "I want to die at home,” or "I want everything done to keep me alive.” Some wishes may be very specific, describing treatments they do not want, often based on what happened to a family member whose death went badly.
Barriers to Advance Care Conversations
Regulations can only set out a basic framework. The proposed rule is necessary but not sufficient because the lack of payment is only one deterrent for these conversations. Although some doctors and other professionals have developed good communication skills and can sensitively address advance care planning, this is not something typically taught in medical or nursing school. Some professionals by example convey to trainees the message that this kind of conversation is to be avoided, cut short, or handed off to someone else.
If the discussion takes place in a hospital with a hospitalist in charge, no one on the care team may know the patient. Coordination with a doctor who has been treating the patient and knows more about the patient’s wishes is erratic at best.
Even within medical specialties, attitudes differ. One study conducted by researchers at the MD Anderson Cancer Center found that oncologists who specialize in hematologic malignancies such as leukemia reported being less comfortable discussing prognosis and advance care planning than oncologists treating solid tumors. The hematologic oncologists also reported feeling a greater sense of failure than their solid-tumor colleagues about their inability to change the course of the disease, and were less likely to report satisfaction in providing end-of-life care.
Talking frankly about the likely course of a disease, and the potential risks and benefits of particular treatments, challenges a physician’s own sense of control and power over disease. Talking about death is taboo in many cultures, and the medical culture has its own way of both managing death and distancing itself from it.
Involving Families in Advance Care Planning
An important aspect of the proposed rule is its inclusion of families. Patrick Conway, chief medical officer of CMS, says that the proposal "supports individuals and families who wish to have the opportunity to discuss advance care planning with their physician and care team, as part of coordinated, patent- and family-centered care.” "Family” is a broad term that encompasses many relationships. The patient is the best judge of who should be included.
Families play a critical role in advanced illness often as both care providers and care managers. Families know the person, the trajectory of the illness, and the way the person has reacted to other challenges. They are often better historians of the illness than the patient, and can provide valuable information and insights.
Some health care providers, however, see the patient, and only the patient, as their responsibility. Inviting family members into the discussion opens up their complex history and relationships, another layer of potential discomfort.
In these situations some providers say that they cannot talk to family members because it would violate HIPAA privacy rules. This is a misunderstanding of the law. HIPAA does not prevent health care providers from sharing personal medical information with family members, as long as the patient does not object. HIPAA does not require the patient’s written consent. And while some patients may not want anyone else to be part of the discussion, their true intent is usually to protect them from bad news, not from privacy concerns. Such thinking is understandable; nevertheless, professionals should encourage the patient to identify a few key people to be part of the discussion.
Families are likely to be more trusting of health care providers who communicate with them, acknowledge their fears and worries, and offer emotional support. Conflicts within a family or between professionals and family can never be totally avoided, but honest and frequent discussion can reduce the tension. In some cases a full family meeting can be helpful to clear up misunderstandings and arrive at a consensus about the goals of care and the treatment plan.
Five Suggestions for Implementation of the Payment Rule
Assuming that the rule goes into effect (and even if it does not), physicians and other members of the care team can do a lot to make these discussions go more smoothly.
First, doctors and other team members should discuss among themselves their own level of comfort or discomfort with these conversations. Within the health care team, it should be clear who is responsible for having these discussions.
Second, if the patient has not already done so, the team should encourage him or her to select a health care proxy. That surrogate should be someone who understands the patient’s wishes and can apply them to the situation at hand, becoming the legal decision maker if that becomes necessary. The documentation designating this person should be readily available for the whole care team.
Third, the patient should document his or her wishes. This can be a state-approved advance care directive, or a more informal statement like the "Five Wishes” document. This does not answer all the questions that may arise in a particular situation, but it can guide the decisions that often have to be made in a crisis.
Fourth, advance care planning is not a one-time-only experience. Even the two visits proposed by CMS seems inadequate for complicated cases. The decisions made at an earlier time may need to be revisited and new clinical information considered in the calculus. Most people do not understand risk statistics so this kind of information needs to be presented as it relates to the particular patient, not the population of patients of which she is a part.
Fifth, professionals who bill for advance care planning should be able to demonstrate their ability to hold these conversations in language that is clear, respectful, and compassionate. That might mean some interactive video training or on-site visits by an expert in the field. Talking about advance care planning requires comfort with the subject, skill in listening as well as talking, and empathy for the people whose lives will be affected by the decisions.
Carol Levine directs the Families and Health Care Project at the United Hospital Fund. She is the author of Planning for Long-Term Care for Dummies (Wiley 2014).