Running head: CAN PLANNING AHEAD SAVE HEALTH CARE COSTS?

Can Planning Ahead Save Health Care Costs at the End of Life?

Joseph R. Yancey

Army-Baylor MHA-MBA Program

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS? 2

Executive Summary

Health care costs are rising at an unsustainable rate in the United States. A high

proportion of health care costs occur in the last year of a person’s life. About half of

these costs are incurred from inpatient medical services. There is concern that such a

high proportion of these costs occurring in the inpatient venue may not be consistent with

the wishes of many American seniors, who overwhelmingly favor dying at home.

Advance care planning (ACP) holds the potential to improve quality of care at the end of

life with improvement in health care expenditures. Managers should focus their ACP

implementation efforts on setting quality standards, educating patients and clinicians, and

developing health policy support. ACP programs should be transparent and must be very

mindful of potential conflicts of interest that could create ethical problems.

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS? 3

Can Planning Ahead Save Health Care Costs at the End of Life?

Rising health care costs in the United States represent an ongoing threat to its

economic security. The Congressional Budget Office (CBO) calculates that the U.S.

Government spends 5.5% of its gross domestic product (GDP) on government health care

programs; by 2046, this number will grow to 8.9% and will be the largest driver of a

doubling of our national debt as a percentage of GDP (Congressional Budget Office

[CBO], 2016). This would make the national debt the largest in U.S. history. The

fractured nature of the American system features inefficiencies that make health care

spending much greater (Shi & Singh, 2015). The U.S. has enjoyed somewhat slowed

growth in health care costs since the passage of the Affordable Care Act, but it remains

highly uncertain whether this is due to the law’s passage or a slow recovery from the

Great Recession (Cox, Dunn, Rittmueller, & Whitmire, 2016).

Another driver for increasing American health care costs is a rapidly aging

population. The “Baby Boomer” generation began to reach age 65 in 2011 and numbered

approximately 77 million people. By the time they all reach age 65 in 2030, 60 million

of them are expected to remain, with all of them eligible for Medicare (Colby & Ortman,

2014). The Medicare Trust Fund is currently projected to become insolvent in 2030

(KHN Morning Briefing, 2014). The elderly are more likely than average to utilize

health care services and less likely to have taxable incomes (Shi & Singh, 2015). Any

plan to address American health care costs will have to figure out how to mitigate those

costs in this growing population.

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS? 4

A recent study suggests that the highest amount of health care spending for an

elderly American occurs in the final year of life (Cubanski, Neuman, Griffin, & Damico,

2016). It is a common conception that most Americans believe their deaths will be a

sudden and peaceful transition. In reality, however, this is rarely the case. For seven out

of ten Americans, death happens at the end of a long, drawn-out battle with a chronic

illness (Shi & Singh, 2015). For these types of issues, evidence-based guidelines are often

varied and numerous factors can influence the medical decisions being made. Thus,

choosing how aggressively to treat different points of illness can be scientifically

challenging for clinicians and personally challenging for patients.

There are several factors that can exacerbate the issues of providing care during

the end of life. One is simply the natural, yet uncomfortable uncertainty surrounding

death. In addition, patients nearing death are frequently unable to speak for themselves,

relying instead on family members and clinicians to decide a best course. The fear is that

this frequently leads to aggressive medical treatment as a default, despite that the utility

of such treatment for some elderly patients may be approaching futility (IOM, 2015). As

an example, while 90% of elderly Americans state that they would prefer to die at home,

Medicare data says that this occurs only about one-third of the time (Henry J. Kaiser

Family Foundation, 2015). Therefore, this type of aggressive inpatient medical care is

not only expensive, but it may not represent the patient’s best interests or wishes late in

life.

Health care managers must understand the issues with end-of-life care in order to

shape their organizations to be more patient-centered and sustainable. Accordingly, this

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS? 5

paper will examine end-of-life care through the lens of rising American health care costs.

It will focus on the elderly, as this population most commonly encounters end-of-life

issues and is the best studied. The paper will then build further on the topic with an

important overview of ethical and social considerations around the topic of death. Then a

variety of interventions will be presented, including evidence of their effect on costs.

Finally, the paper will suggest ways forward that may hold promise for improving patient

care at the end of life while remaining ethical and yielding economic benefit for patients,

clinicians, and the American health care system.

Health Care Costs at the End of Life

To better understand the depth of this problem, a review of current trends in

healthcare expenditures for the elderly is necessary. Most of the available data

examining health care costs at the end of life for the elderly comes from the Medicare

program. This data shows that health care expenditures increase dramatically for seniors

in their last year of life. Approximately 25% of Medicare expenditures ever spent on an

individual person is spent during their last year of life (Neuman, Cubanski, Huang, &

Damico, 2015). In fact, the average amount of Medicare costs spent per person in the last

year of life is $33,486 (see Figure 1).

This expenditure data also shows that Medicare spending varies by age. The total

average Medicare spending tends to be highest for the very oldest, peaking at age 96 with

an average of $16,145 per year (Neuman, et al., 2015). However, when a patient is in the

last year of life, the expenditure pattern is different. In these patients, expenditures peak

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at an average of $42,933 at age 70, then decrease gradually and fall below the average of

$33,486 after age 85 (Henry J. Kaiser Family Foundation, 2015). It is believed that those

who are in the “oldest of the old” category are more likely to seek less aggressive medical

treatment at the end of life (Henry J. Kaiser Family Foundation, 2015). This is likely due

to the fact that they (patient and provider) have a better understanding that further

medical interventions would be futile.

Figure 1. Medicare spending per beneficiary in final year of life (Henry J. Kaiser Family

Foundation, 2015).

It is also important to understand that health care spending at the end of life can

vary considerably by the type of care provided to the patient. For instance, about one-half

of Medicare expenditures in the last year of life for elderly patients are spent on inpatient

medical services (Henry J. Kaiser Family Foundation, 2015). In contrast, 10% of total

expenditures are spent on hospice services, while another 10% are accounted for by

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS? 7

skilled nursing care (Henry J. Kaiser Family Foundation, 2015). A study by Kaplan

(2011) helps provide an explanation for these differences in service utilization patterns at

the end of life. His study indicates that care in Los Angeles, California, had a 42% higher

total end-of-life cost than San Diego. The author suggests the difference was attributed to

relatively higher use of inpatient medical services in Los Angeles versus relatively higher

use of hospice services in San Diego (Kaplan, 2011). While the findings may be hard to

generalize, it does suggest that a high degree of variance in type of health care resources

within even local areas can have a high impact on end-of-life costs.

It is important to note that while the difference in costs incurred at the end of life

are drastic, one should not infer that solving this problem would solve the problem of

high costs in American health care. In a study examining the top 5% of individuals with

the very highest health care expenditures in the U.S., only 11% of these people were in

their final year of life (Aldridge & Kelley, 2015). Although it would likely help in a

significant way, the problem of high health care expenditures in the U.S. is a pervasive

one and cannot be solved by focusing on a single population or intervention.

End-of-life Interventions

In many ways, the problem of how to address care for the chronically ill at the

end of life is a modern one. Increases in medical technology and in life expectancy

worldwide have opened new doors for patients, but have also left us less than prepared

for dealing with the frequently slow death that comes from chronic illness. The

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS? 8

following interventions, none of which are mutually exclusive, are commonly

underutilized and will be reviewed here.

The most common form of end-of-life intervention is an Advance Directive (AD).

These are legal documents constructed by a person giving instructions to health care

workers and family members on what to do in the event the author of the directives loses

the capacity to make medical decisions. ADs became more common in the 1990s after

the Patient Self-Determination Act was passed by Congress. This law required hospitals

to inform patients about their basic rights, including the right to formulate ADs (Shi &

Singh, 2015).

Advance directives can take different forms. For instance, Do Not Resuscitate

(DNR) orders instruct medical personnel to forgo cardiopulmonary resuscitation (CPR) in

the event of cardiac arrest. A living will, on the other hand, goes further to give more

specific instructions on what to do in the event a patient loses decision-making capacity.

For example, one could ask to avoid placement on a ventilator to maintain breathing.

Finally, a durable power of attorney appoints a specific person to be the patient’s proxy

for decisions in case the patient loses decision-making capacity (Shi & Singh, 2015).

Each is an important document in its own right.

While they are the most common end-of-life intervention, few individuals have

actually documented their wishes for treatment preferences at end of life. In fact, about

40% of adults over age 65 do not have ADs (Henry J. Kaiser Family Foundation, 2015).

Several factors are thought to play a role in the lack of widespread adoption, including

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS? 9

communication difficulties with medical staff, a lack of trust, distrust of medical systems,

lack of understanding of options (Henry J. Kaiser Family Foundation, 2015), difficulties

in paperwork completion, and discord between family members (Glick et al., 1998).

It is also important to understand that, while advance directives are important

tools in end-of-life care, many experts now believe that ADs by themselves are

inadequate to maintain good quality of care for those at the end of life (IOM, 2015).

Theories as to why vary, but include that they are not widely used, not easily found when

needed, may not be valid or are too vague for certain situations, or that medical personnel

are unwilling to honor them (IOM, 2015; Klinger, in der Schmitten, & Marckmann,

2016). In addition, there does not appear to be an association between the presence of

ADs and lower health care costs (Teno, et al., 1997). Therefore, other innovative ways to

organize for end-of-life care have emerged.

One particular way of organizing is with advance care planning, or ACP, which

represents a much broader approach to addressing issues at the end of life. While ACP

frequently includes construction of ADs, it is meant to be more comprehensive and

continuous, incorporating ongoing conversations between patients, physicians, and

families about goals of care at the end of life. It represents an attempt to go further than

simple written orders to an enhanced mutual understanding between patients and clinical

staff. While ADs vary in form across different states, formal ACP programs are even

more different and are often local or regional in scope. Proponents of ACP believe it

represents a higher quality of interaction with patients in terms of end-of-life issues,

allowing greater time and communication to take place on an uncomfortable, complicated

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS?10

topic. Also, ACP increases the use of palliative care interventions at the end of life,

decreases family burden for decision making, and helps to prepare patients and families

emotionally for death (IOM, 2015).

Significant barriers have prevented wider adoption of ACP. While ADs can be

prefabricated and easily reproduced, ACP demands more time and emotional energy of

the physician and the patient (Klinger, et al., 2016). In addition, much of the extra time

to complete ACP has not been reimbursed to the physician. Recognizing this, the Center

of Medicare and Medicaid Services (CMS) started to reimburse physicians for ACP-type

services starting in 2016 (Henry J. Kaiser Family Foundation, 2015). It remains to be

seen how an improved financial incentive will affect wider implementation of ACP.

In a recent systematic review, Klinger and colleagues (2016) asserted that ACPs

may reduce health care costs. For example, of seven studies included in their review, six

of them showed that it reduced costs. The range of reduced costs was very wide, from

$1,041 to $64,827, with relative reductions ranging from 5% to 68%. Cost reduction did

seem to be highest in the sickest populations. The authors noted some limitations (i.e.

that there was great variability in the calculation of costs) and that their results should be

interpreted with some caution. Of note, the studies that showed cost savings were also

more successful in their quality measures (Klinger, et al., 2016). Regardless, this review

suggests that high-quality ACP programs could improve both quality and cost at the end

of life, although more studies are needed to determine what components provide the

highest value to patients.

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Another common intervention at the end of life is hospice care. Hospice care

represents a subset of palliative care where patients are expected to live for six months or

less (Shi & Singh, 2015). The focus of hospice care is usually on making patients more

comfortable as opposed to extending their lives. Medicare covers hospice services with

almost no cost sharing from beneficiaries. Hospice has become much more popular in

recent years, with 47% of Medicare patients who died in 2013 using the service versus

23% in 2000 (Henry J. Kaiser Family Foundation, 2015).

It is well accepted that hospice services cost far less than inpatient medical care

for the elderly; palliative care interventions typically cost far less than more intensive

interventions focused on cures (Neuman, et al., 2015). Still, hospice services have

become substantially more expensive since 2000; there is concern that the proliferation of

for-profit hospice companies may partially explain this phenomenon. Moreover, data

suggests that hospice spending per capita rises with age, peaking at age 104, and only

exceeds inpatient medical services spending for patients per capita once they pass the age

of 100 (see Figure 2; Henry J. Kaiser Family Foundation, 2015). This suggests that this

type of care is more generally accepted for the “oldest of the old” population rather than

the standard of care for other age groups at end of life. Again, these utilization patterns

could show an opportunity to reorganize to improve patient centered care and reduce

health care expenditures.

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Figure 2. Medicare spending by age (Henry J. Kaiser Family Foundation, 2015).

Ethical Considerations

Controlling costs is of utmost importance to modern U.S. health care. However,

seeking to do so by addressing end-of-life costs presents the health care manager with

potential ethical concerns. For example, it is not difficult to see how health care

administrators and providers responsible for controlling costs may seek to steer patients

to less expensive modalities regardless of the goals of the patient. At the same time,

modalities such as ACP and hospice tend to be more patient-centered, improving quality

of life and reducing costs. The ethical implications of cost control at the end of life will

be examined through the lens of the principles of biomedical ethics that are most affected

by such decisions: autonomy and justice.

Autonomy

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A recent systematic review of ACP by Klinger and colleagues (2016) recognized

the potential ethical implications of cost control at the end of life. The authors argue that

ACP in its purest form should enhance patient autonomy by enhancing communication

between patients and clinicians about goals of care and better informing the patient about

what is possible and what is likely about the end of life. Still, expert power rests in the

hands of physicians in end-of-life discussions and the potential to abuse that power is

real.

In order to avoid any impropriety that would risk patient trust, the authors suggest

that ACP programs should focus on the following: 1) transparency of objectives, 2)

adequate supervision and training of personnel involved, 3) clear standards, and 4)

educating facilitators about potential conflicts of interest (Klinger, et al., 2016). In a

separate examination of the ethics of end-of-life planning, Donley and Danis (2011)

argued strongly that transparency about costs, especially those borne by the patient, is

essential to patient autonomy. For example, they suggest that a patient could decide that

money spent to prolong his life minimally may be better spent on an enjoyable vacation

in the near term instead (Donley & Danis, 2011). Therefore, ACP programs must focus

on remaining patient-centered and patient-controlled.

Justice

Donley and Davis (2011) also point out the uncomfortable truth that societal costs

of end-of-life care are higher for those at the lower end of the socioeconomic spectrum.

This population has less ability to share in costs at the end of life. Any effort to control

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS?14

costs by governments or other powerful entities at the end of life has more potential for

abuse in this vulnerable population. (Donley & Davis, 2011).

There is also evidence of differences in end-of-life care for racial minorities.

Black and Hispanic populations use hospice less and have higher costs for end-of-life

care than do white populations. Some of this difference is accounted for by

socioeconomic disparity while much is due to a higher use of inpatient services at the end

of life (Hanchate, et al, 2009). Thus, healthcare organizations must focus their ACP

programs on reducing healthcare disparities for those who live in poverty and racial

minorities while resisting any attempts by governments or healthcare organizations to

encroach on the autonomy of those with less power.

Recommendations

In 2015, the Institute of Medicine published a comprehensive study on end-of-life

care entitled Dying in America: Improving Quality and Honoring Individual Preferences

Near the End of Life (2015). This report was meant to be a follow-up on an earlier report

from 1997 called Approaching Death, which highlighted some of the aforementioned

shortcomings of ADs and increased the medical community’s awareness of advance care

planning. The motivation behind the 2015 report, in part, was the supposed inclusion of

“death panels” in the Affordable Care Act (ACA). This accusation was a part of the

severe political backlash during public debate regarding the ACA in 2009-2010. While

“death panels” have never existed in the United States and were not present in the ACA,

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS?15

the fear generated by this accusation led many medical leaders to become concerned

about fear in the general public becoming a barrier to quality end-of-life care.

The study group generated a list of five recommendations for the U.S. health care

system in regards to end-of-life care, which are summarized more briefly in this paper.

First, health care payers should cover “comprehensive care” that is holistic, patient-

centered, and high quality to those with advanced serious illness nearing the end of life.

This should include access to palliative care and/or hospice as appropriate and desired.

Second, professional societies should develop standards for communication within ACP

that can be measured and encourage patients to participate fully in their health care

decisions at the end of life. Third, all institutions with an interest in continuing medical

education, including but not limited to hospitals, accrediting bodies, and state regulatory

agencies, should further clinicians’ education regarding palliative care. Fourth, payers of

health care and health care delivery organizations should integrate financial incentives

with quality of care in the end of life, including public reporting of quality measures.

Finally, civic and community organizations should assist in educating the public on end-

of-life care with assistance from medical personnel, including to help dispel rumors or

political innuendo surrounding the subject (IOM, 2015). Table 1 lists a variety of

practical applications of these recommendations that could be pursued by healthcare

managers.

While the IOM report does not focus on reduction of health care costs, the report

acknowledges that ACP has that potential, particularly in its fourth recommendation on

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS?16

1. Health care payers should cover “comprehensive care” that is holistic, patient-centered, and high quality to those with advanced serious illness nearing the end of life.

Provide resources to ACP programs

Promote hospice programs to clinical staff and patients

Advocate at a policy level for reimbursement of ACP by all health care payers

2. Professional societies should develop standards for communication within ACP that can be measured and encourage patients to participate fully in their health care decisions at the end of life.

Promote success of existing ACP programs within professional societies and share best practices

Develop partnerships between professional societies and form working group to construct ACP standards

3. All institutions with an interest in continuing medical education, including but not limited to hospitals, accrediting bodies, and state regulatory agencies, should further clinicians’ education regarding palliative care.

Provide resources for continuing medical education (CME) to clinical staff regarding ACP and palliative care, especially time

Hire and support geriatricians or other specialists with extra training in palliative care or end-of-life interventions

4. Payers of health care and health care delivery organizations should integrate financial incentives with quality of care in the end of life, including public reporting of quality measures.

Encourage development of quality measures for end-of-life care

Promote quality measures to general public

5. Civic and community organizations should assist in educating the public on end-of-life care with assistance from medical personnel, including to help dispel rumors or political innuendo surrounding the subject.

Create health promotion campaigns regarding end-of-life care

Partner with community senior organizations and caregiver support groups to hold educational events

Table 1: Recommendations for healthcare managers based on IOM report

the actions of health care payers (2015). Given the recent history of public discourse

regarding end-of-life care, placing health care cost control as a primary goal is both

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS?17

politically unwise and has the potential to be ethically problematic. At the same time,

with many health care and political leaders viewing rising health care costs as an

existential crisis, it is important to find a way to speak honestly about the issue. Donley

and Davis advocate for this in their analysis of health care costs at the end of life, urging

transparency in discussion with patients (2011). While their focus is on the patient-

physician relationship, perhaps increasing the frequency and quality of these discussions

at a relationship level will allow for better informed and substantial discussions in the

future at the policy level.

As the body of evidence around ACP grows, one practical policy area where

improvement could be made in its implementation is in promoting its practice to patients.

Medicare’s reimbursement of ACP services may help clinicians feel more comfortable

spending the time necessary to work with patients on end-of-life issues, but there remain

a number of barriers for patients to engage. It may be plausible to put some sort of

automatic trigger in place for ACP to happen, whether at age 65 when Medicare benefits

begin or when a Medicare patient has a hospitalization. Still, this would have to be done

very sensitively, as anything resembling a government mandate to complete ACP could

be characterized as another “death panel”-type action.

Conclusion

The rising cost of American health care is not sustainable (CBO, 2016). A major

driver of these costs is health care provided to those in their last year of life (Henry J.

Kaiser Family Foundation, 2015). Advance care planning represents an opportunity to

CAN PLANNING AHEAD SAVE HEALTH CARE COSTS?18

move beyond advance directives to improve the quality of care delivered in the last year

of life while also better controlling costs (Klinger, et al., 2016). Health care managers

must ensure that their ACP program be well-organized and avoid conflicts of interest that

could lead to ethical failures and a loss of trust with patients (Klinger, et al., 2016).

Healthcare managers can develop several actionable steps to reorganize and promote

improvements in end-of-life care. These implementation efforts should focus on engaging

providers, payers, and the community to ensure the changes are widely accepted and

valued. This is an innovative area of medicine and further studies and coordination is

needed among entities inside and outside the health system in order to achieve

improvements in end-of-life care, including controlling costs (IOM, 2015).

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