Challenging Dogma - Spring 2011

Friday, May 6, 2011

End-of-Life Care: Going from Death Panels to Respect for Patient Autonomy-Cheryl McSweeney


Death is a universality and yet it is poorly prepared for during life. Seventy percent of people surveyed report that they want to die at home, yet only about twenty-five percent actually do (1). In this world of ever-increasing medical technology, it has become less clear when “nothing” can be done for patients and countless end up hospitalized for their last days of life. Family members are left with the task of speaking for patients who are no longer able to speak for themselves, often without having had any prior discussion of the patient’s wishes. This leads to increased stress and regrets for the next of kin and doubtless steps being taken that patients would not themselves have desired (2).
Research has shown that advance care planning, such as designating a health care proxy, someone who will act as the patient’s voice if necessary, or writing a living will outlining a plan for end-of-life care treatment decisions, has beneficial effects for patients and families. One recent study found significantly less stress, anxiety and depression among caregivers whose deceased elderly family members had an end-of-life plan versus those who did not. The patients and family members who received advance care planning also had higher satisfaction with their experiences (3-4).
The current approach to the promotion of advance care planning and inclusion of palliative options in end-of-life care in the US leaves much room for improvement. Palliative care is by definition focused on alleviating pain and suffering for patients and thereby improving quality of life for patients and their families. Recent research also suggests that palliation when used in conjunction with standard treatments improves life expectancy for terminally ill patients (5). Yet, still the conversations needed for advance care planning are not happening between doctors and patients and between patients and family members. One study showed that only twenty to thirty percent of patients had advance directives (1). Even among the patients who did have an advance care plan, only twenty-five percent of their physicians were aware of the plan in one study (1).
There are a number of non-governmental organizations advocating for increased end-of-life planning including the Center to Advance Palliative Care (6) and the American Hospital Association (7) but to date there has been no widely recognized national program. The largest effort is the rather blandly named, National Healthcare Decisions Day, which just had its fourth annual event on April 16, 2011 (8). This group is a collaborative effort among over 100 national, state and community organizations “committed to ensuring all adults with decision-making capacity in the United States have the information and opportunity to communicate and document their healthcare decisions” (8). Such attempts to promote discussion of end-of-life care planning on a national level have met with anywhere from mixed results to outright fear and hysteria in the past several years. Particularly, as the concept of reimbursing physicians for discussing advance directives was recently equated with government “death panels” that decide who is allowed to live, the country has experienced a huge setback in wider implementation of advance care planning. This paper will discuss recent missteps in the dissemination of advance care planning and how to reframe the current debate.

Getting Framed

The recent inflammatory debate about advance care planning was initiated during the battle over health care reform in 2009. An early Democratic House version of the Patient Protection and Affordable Care Act (PPACA) contained a provision for reimbursement of medical providers to discuss with patients their plans for end-of-life such as having a health care proxy and advance directives (9). The Republican leadership and right wing commentators seized upon this and launched a media campaign against the bill that focused on an interpretation of this provision. House Republican leader, now speaker, John Boehner said in a statement July 23, 2009, “This provision may start us down a treacherous path toward government-encouraged euthanasia if enacted into law” (10). Sarah Palin notably referred to the “Advance Care Planning Consultation” part of the bill as a “death panel” in a Facebook post on August 7, 2009 stating, “The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama's "death panel" so his bureaucrats can decide, based on a subjective judgment of their "level of productivity in society," whether they are worthy of health care. Such a system is downright evil.” (11).
From this statement the concept spread rapidly to other media outlets and has become a pervasive and persistent belief of many. The strong public reaction engendered by the concept of government involvement in such personal decisions was used as a catalyst to increase doubts and criticism of the bill in general. The administration’s effort to promote the use of advance directives was flawed in that there was no public approach. The financial incentive for medical providers was included in the bill the Democrats but the debate was allowed to be framed by the Right who was able to use it their advantage.
The social science theory of psychological reactance tell us that once a belief is strongly held it may be even more forcefully defended once confronted with knowledge to the contrary (13). In this case, when the attacks became overwhelming, the provision was withdrawn from the final bill that was passed. “Death panels” received the “Lie of the Year” Award in 2009 by (10), a fact checking newspaper website. Despite this and numerous thorough debunkings of “death panels”, a December 2010 poll by the Kaiser Family Foundation found that forty percent of people believed that the adopted legislation included government panels the would make decisions for Medicare patients about end-of-life care (12).
Opponents of the bill were able to frame it as limiting freedom and threatening life, among the most basic needs in Maslow’s Hierarchy (14) about which the strongest defenses can be expected. The failure of the administration and Democratic proponents was in not presenting it first with a similarly strong, and also truthful, frame of protecting freedom of decision making in health care by allowing patients to express their wishes regarding care, at its extreme to continue life sustaining treatment or have it withdrawn. The true failure is that patients may be more likely to suffer now if patients and doctors are even less likely to discuss end-of-life options.

Your Money or Your Life

The basic principal of promoting discussion of advance care directives by reimbursing medical providers to talk about it with patients is flawed. The fact that the public was hearing about end-of-life care in the media in relation to a government-spending bill inextricably links it to money. The perception that physicians may be motivated by financial incentives to provide less care and even let patients die in order to save money is unavoidable. Without background to understand the larger context of palliative care and hospice, this is a reasonable conclusion for those with little trust of the medical establishment. It is true that seventy-eight percent of Medicare care costs for treating cancer are spent in the last month of life and costs for patients who have discussed end-of-life care are one-third less than those who have not (1).
The fact that palliative care is money saving compared to standard care cannot be the primary motivation behind its adoption. It is desirable as an option for patients because it can be better care for all the reasons stated above not because it is cheaper. It improves patient and family satisfaction, reduces stressors and when used in conjunction with standard care, it increases life expectancy. It is not killing off Grandma. Statistically speaking, it appears she may actually live longer.
The problem lies in people’s underlying feelings about the distastefulness of putting a financial value on certain relationships and events. As articulated in the examples in Ariely’s Predictably Irrational, we are happy to do things when they are free but attaching money to them feels distasteful and will keep people from being involved (15). Particularly with such a sensitive topic as life and death, mixing the strong emotions that surround those events with financial price tags bucks the social norms and may cause the opposite of its intended effect with further avoidance of the subject. While reimbursing doctors for the care of patients is a necessary concept, it should not be the focus of any public campaign to adopt a new approach to care, no matter how beneficial it is. The side benefit of cost reduction from palliative care must remain that, a side benefit, and never the focus.

It Can’t Happen to Me

The proposed legislation included money for doctors to talk about end-of-life care but no provisions for how to do this. Most medical providers are not well trained in palliative care. A 2003 national telephone survey of medical students and residents found less than eighteen percent had a formal instruction in end-of-life care (16). Stipulations for education of care providers would be necessary for any plan to be successful.
Discussing advance directives with a doctor is not sufficient, patients must also in turn have the discussion with their families so families understand their wishes and are in agreement with following them. This side of the conversation can be equally difficult to facilitate. It is never an easy topic to bring up either when someone has a terminal illness or even when they are healthy. Part of human psychology is to live with an optimistic bias (17). Even though we are aware of the eventuality of death, it is not a daily presence typically. For those with illness or increased risk of disease it is particularly difficult for people to use known odds as applied to themselves. For example, in the case of a devastating cancer diagnosis with a five percent survival rate, most patients will overestimate their odds of being in that five percent. This optimistic bias colors every discussion they have. The benefits of this outlook include preserved hope and the ability to continue with difficult treatments but the drawbacks can be tragic. In such a case, it would be quite reasonable to want to have advance directives in place and discussions about palliative care upfront but too often these options are not discussed until all else has been exhausted and patients are close to death.
This unrealistic conceptualization of risks is not just a problem for patients and families but also for doctors. Research has shown that doctors are not good at estimating life expectancy of patients (18). This may be one reason they are reluctant to provide patients with estimates of the time they have left so as not to provide false hope or unfounded worry. Studies have also shown doctors too are influenced by personal relationships with patients. When estimating life expectancy for their own patients they tend to overestimate the time by a greater margin the longer they have known the patient (18). The relationships doctors form with patients also may influence treatment options presented. Because medicine almost always has some form of treatment it is often difficult to know when palliation of symptoms should be more the focus.
The concept of palliation is associated with some controversial issues in this country. Euthanasia was mentioned by now Speaker of the House John Boehner in relation to the Patient Protection and Affordable Care Act. This is a common misconception. Palliation is about making a patient more comfortable, not about hastening or causing death. Even knowing this, discussing palliation can feel to patients, families and doctors like giving up on a fight or even on a person. This tends to limit access to hospice care until the very end of life for most patients. Studies have shown that while hospice is a system of palliative care for patients in the last six months of their lives, the median time between referral to hospice and death is less than two months (19). This late entry into hospice care is, in part, also due to optimistic bias.
The recent Massachusetts General Hospital study of early palliative care mentioned previously introduces the concept of providing palliative services to those with serious illnesses from the beginning of their diagnoses (5). As palliation is about relieving suffering, it can be offered to everyone regardless of what other more standard treatments they are pursuing. This combination is what produced the beneficial outcomes discussed above, including most importantly for reluctant patients and families, prolonged life. There is no fundamental reason elements of palliative care need to be mutually exclusive from standard care.

Advancing a New Plan for Advance Directives

The medical establishment has known for some time that advance directives, palliative care and hospice are beneficial to patients. The Institute of Medicine in 1997 issued a report calling for increased access to these options (20). Yet, in the intervening years, virtually no progress has been made. Worse still, small efforts like legislating payment to physicians for discussing end-of-life care have inflamed and distorted the discussion.
In March 2011, Massachusetts released an expert panel report on end-of-life care that addresses these shortcomings (21). The panel itself was 42 members drawn from state government as well as patient advocacy groups and the medical establishment. The report reviews how even in Massachusetts, where less than three percent of the population was uninsured in 2008 (22), the health care system fails to: document wishes about end-of-life care, alleviate pain, allow patients to die at home, support families, train the health care workforce in end-of-life care, provide hospice benefits in all insurance plans, and fund effective oversight to ensure improvement in these areas (21). They call for a multi-faceted approach for advancing comprehensive end-of-life care, including improvement in the areas mentioned above but also, especially in the wake of the “death panel” controversy, an aggressive public awareness campaign.
The intervention to be discussed here will begin with such a public education initiative to reframe the idea of advance care directives to focus on the patient empowerment aspect of deciding on a plan for end-of-life. To combat the problems of optimistic bias and reactance, personal stories will be used in this media campaign to reach target families similar to those seen in the advertisements. Education of medical providers in addition to the public will be crucial to overcoming barriers to care. Finally, financial incentives will specifically not be a focus of the intervention to avoid the conflation of issues that plagued the passage of the PPACA.

Reclaiming the Frame

Sarah Palin’s initial statement about “death panels” spread rapidly in part because it presented the legislation as an arbitrary threat to life. Moreover, the threat was coming from the government, a powerful overarching source that could threaten people’s control over their own bodies. When framed this way, the bill was seen as attacking basic personal needs which according to Maslow’s Hierarchy are the most staunchly defended (14). Additionally, as mentioned above, when the belief was questioned psychological reactance was also strong as people held onto their misconceptions even though it would seem to be to their own detriment not to talk about end-of-life plans with their doctors (13). With this combination of forces in play, it is no wonder the backlash against the bill was so fierce.
A widespread media campaign that reframes the issue is needed. The idea of thinking about end-of-life plans and designating someone to speak for you in case you cannot should be seen as beneficial and empowering. The campaign needs to use just as strong a frame to encourage advance directives as the opponents of the PPACA did to fight the bill. Advance directives preserve a patient’s autonomy and freedom to choose what medical care they wish to receive or not. The declaration of a health care proxy enables patients to have someone they trust protect them in the moments when they may not be able to protect themselves. A proxy can decide what course of action they would most desire, be it whatever life-sustaining treatment is available or withdrawal of interventions in certain situations. The true threat to life is not having a health care proxy or advance directives in place.
In researching this paper, there was very little information on advance directives or palliative care on the traditional US government websites, such as the Centers for Disease Control and Prevention or Surgeon General’s sites (23-24). What was there was more related to care for AIDS patients in Africa or people with advanced dementia. The most easily accessed website that encouraged universal advance directives and used the most motivating language was called “Will to Live” (25). It is run by the National Right to Life Committee (NLRC), which has its own motivations in disseminating information about advance directives. They were involved in protesting the Terry Schiavo case and are anti-abortion advocates. The NLRC also continues to perpetuate the “death panel” concept as it relates to other areas of health care reform, including provisions to encourage the shared decision making of patients with providers (26). The language they use around advance directives however is something public health and government officials can learn from in their promotion. Their homepage urges people to complete advance directive forms to “protect their own lives” and designate agents to speak for them and protect their right to treatment as patients should they not be able to speak for themselves. The tactics the site goes on to use are more fear-based motivators that imply anyone with a disability can have food and water withheld from them if they sign a basic living will for example which is not true and counterproductive rhetoric but the initial language may be a model for how to promote advance directives.

Painting a Picture

The other reason Sarah Palin’s statement was so lasting is that it was incredibly evocative and personal. Most of the country was familiar with her infant son with Down Syndrome from the presidential campaign in 2008 and the idea of him standing before a death panel everyone can agree is fundamentally wrong. It didn’t matter that it was not true; it still evoked an image that provoked a strong response. Proponents of advance directives and palliative care need to create an equally strong response.
Particularly because the universal fact of death and dying is so difficult to talk about and optimistic bias helps make it even less likely that someone would independently decide to have a discussion with family or doctors, a robust intervention is needed. The best way to overcome optimistic bias is with personal stories (27-29). While people tend to underestimate their own risk of death or illness given statistics, according to the law of small numbers, when confronted with a personal story they will tend to overestimate the chance of a similar instance occurring to them or their loved ones (30).
Using a variety of personal stories, preferably with patients and families similar to the target audiences to assist in overcoming reactance as well, would create an effective intervention (13). Television and web-based public service announcements with families and patients talking about the importance of end-of-life planning would be the most powerful. The National Healthcare Decisions Day website contains a recent link (posted after the event for this year) from a video project by the New Jersey Hospice and Palliative Care Organization (31). The video is about five minutes long and contains the stories of two adult children whose parents recently died describing how their experience knowing their parents’ wishes in their last weeks and having the support of hospice care really gave them comfort and the ability to spend cherished time with their family members. Even more powerful is a written comment that appears in the middle of the video:

I think all the time that I made the wrong decision to withdraw the ventilator.
Maybe she could have lived.
I wish I’d known what she wanted.
–husband of 48 year old woman with irreversible brain damage

This angle is one that is not typically addressed in the literature promoting advance directives but it is worth pursuing as a persuasive argument for having a discussion with family members. Even if someone cannot conceptualize their own death, most would not want family members to continue to suffer not knowing if they made the right decision after they are gone.
Extending the personal story concept to famous spokespeople for some of the advertisements would also be an eye-catching technique. Death comes to everyone so surely there are events in the lives of celebrities or other well-known people that could be sensitively adapted to a public service announcement if willing participants could be found to share such personal stories. While these people may not be similar to the target audiences in terms of socio-economic status, the idea that they also have had to deal with issues of death and dying may help normalize the discussion and encourage use of advance directives and palliative care when appropriate.
Including language in the videos that families can use to bring up the topic would also be facilitative. Sometimes just having a few words or an approach to a topic can help with getting the conversation started. Think about how much easier the pharmaceutical company advertisements have made it for patients to bring up “ED” with their doctors as opposed to talking about their inability to get an erection. Even a catch phrase, for example, “what would YOU do?,” or “got a plan?,” could help with marketing the ads and broaching the subject.

Additional Components of a Successful Plan

Once the public face of advance directives is more about patient empowerment and not about government deciding who lives and dies, it will be possible to move forward with implementation of more widespread end-of-life care planning. A strong enough public awareness campaign could have patients asking for information or advice about advance care planning. Look again to the pharmaceutical companies. Before their direct-to-consumer marketing, it was extremely rare for a patient to come in requesting a specific prescription or treatment whereas now it is commonplace (32). If only public health could market beneficial interventions as well.
In order to be prepared for public openness to discussion about advance directives or palliative care as a component of treatment, medical education must be improved. As reviewed above, the current state of education on management of death and dying is poor. Many physicians are not fully comfortable discussing end-of-life issues with their patients, which contributes to their not being addressed adequately (16).
Yet, medical providers are taught techniques for eliciting the most sensitive of disclosures from their patients. Surely end-of-life care discussions could be an added skill if it were prioritized in medical education. For doctors already outside of training, additional continuing medical education supplements to their learning could be provided. Direct financial incentives could not be the primary motivator to avoid further conflation of issues but insurers or employers could certainly require training in this type of consultation as some now do for training in cultural competency (33). The cost savings that is a side benefit of palliative care could fund such educational initiatives.
A final aspect of the proposed intervention is to automate the process. With the push for all medical offices to move to electronic medical records, it becomes possible for automated reminders to prompt providers to ask patients about advance directives. The record is also a reliable place to input the patients’ wishes or proxy contact information so it can be easily found in the case of an emergency.

End-of-life care has gotten short shrift in the past two years when it has been hijacked for political gain by health care reform opponents. It is time to reclaim this beneficial aspect of medical care and expand the reach of advance care planning to more of the public. By reframing the debate and empowering patients to make their health care wishes known to their families and training medical providers to be competent with end-of-life care, much pain and suffering can be avoided, and yes, costs will be saved. More importantly, the quality of life for patients and the family members they leave behind will be improved.


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