The concepts of palliative care began with the hospice. Originally the hospice was a resting place for wary travelers in the 4th century. In fact the latin term for hospice means to conceal or alleviate symptoms without curing”. However, by the 19th century hospice’s religious areas established hospices as places for the dying in London and in Ireland (News Medical). End of life care is a “modern” idea that began in the 1950’s and was first written about by Dr. Cicely Saunders (Loscalzo, 2008). She described her feelings and ideas based on the feelings of dying patients. Dr. Saunders believed that the concept of end of life care needed a large team of interdisciplinary people to help patients and their families organize themselves when it comes to this difficult time in life. The idea of an interdisciplinary team is still today at the core of end of life care. The dean of Yale University, Florence Wald invited Dr. Saunders to the U.S so she could teach about her experiences with end of life care, and in 1974 Mrs. Wald established the first home hospice program in New Haven, Connecticut. In 1975 St. Lukes Hospice was the first hospice to be incorporated into an existing medical hospital and in 1982 the first children’s hospice opened its doors in London; however pediatric palliative care is still an area of hot debate and doctors specializing in this field of medicine have only begun to scratch the surface.
In the 1960’s, the psychiatrist Elisabeth Küber-Ross, authored the book “On Death and Dying”. She faced much resistance in her beliefs of treating people at the end of their lives. She presented the book in such a way that it humanized how dying patients were cared for. In the mid 1970’s, a Canadian doctor, Dr. Balfour Mount used the term palliative care instead of the term end of life care. This switch in terms made it so the French population of Canada did not associate this idea with such a negative connotation.
It was not until the late 1990’s that the United States examined their policies on end of life care. The report “Approaching Death: Improving Care at the end of life” described the serious deficiencies in end of life care. After this report was published there was a massive push to bring palliative care into mainstream medicine. It was not until 2004 that clinical practice guideline’s for palliative care was introduced; it included not just patients that were dying but also patients that suffered from chronic life limiting diseases. Besides the patients themselves it also described how to assist families with physical, psychological, social, or spiritual distress (Loscalzo, 2008). By 2006, the United States had 57 end of life care fellowships offered to doctors. Also in 2006, the American Board of Medical Specialties and the Accreditation Council for Graduate Medical Education started to recognize the subspecialty of Hospice and Palliative Care.
Specialists in palliative care are extremely skilled in prescribing medications that aid in relieving pain symptoms in these patients. These specialists have helped us describe how morphine, an opioid, can be used safely and effectively while still keeping the patient fully functioning. However, when the symptoms go beyond medical assistance, the other members of the palliative care such as, social workers, councilors, and spiritual leaders are used so as to employ other methods other than the medical/pharmacological interventions.
Palliative care is a long process that integrates the struggle patients have to accept death on their own terms, so that they feel they may die with dignity. It is a subspecialty that tells patients and their families that doctors will not give up on care just because treatment options have been exhausted or failed. The role palliative care in medicine is ever changing.
An issue that was already decades old in a 1994 ethics article (Emanuel and Emanuel), the cost of end-of-life care is an issue that provides both an economic and actual definition of the limitations of medicine. Eventually, all patients die, but the question becomes what treatment and care should be administered to patients in their end-of-life stage. Therefore, this issue defines both limitations in medicine in that there are conditions that modern medicine have no treatment for, as well as limitations from the point of view of the inherent waste in spending limited medical dollars on treatment of patients so close to dying. Necessarily, the first issue becomes defining when this time period is for any particular patient, as end of life is only easily defined in retrospect (Emanuel and Emanuel, 1994). But it remains that when looked at retrospectively, the cost of medical treatments and care during the end of life take up a disproportionate amount, specifically, an estimated 25% of spending by Medicare (Wasik, 2012).
When looked at specifically, the amounts spent in end-of-life treatment, from both Medicare and out-of-pocket are sobering. A survey performed in 2013 by the Mt. Sinai School of Medicine found that out-of-pocket expenses for beneficiaries averages $38,688 during the last five years of life, where the average amount spent was $23,000. The top quarter within the survey spent an average of $102,000 per year on medical expenses, with dementia being the most expensive illness to treat (Kelley et al., 2013). Many patients are forced to liquidate all assets, including real estate, in order to meet these high end-of-life costs (Wasik, 2012).
But there are concrete suggestions as to how to solve this problem such that end-of -life treatment does not have to function so much as a limitation in medicine. Instead, it can be a time of life where the patient wishes are followed and the subsequent cost to society need not be astronomical. In particular, after a yearlong project investigating this issue, Kreiger suggests the following actions to patients to help reduce the cost of end of life medical care and allow the patient more control in how end of life is done. The first suggestion is putting wishes into writing (Kreiger, 2013). The may appear on first glance to be common sense, but due to denial it is something commonly overlooked or at least overlooked until it is too late, as the patient no longer has the physical ability to express their wishes. According to Kreiger, only 23% of people have recorded their end-of-life wishes in writing. There is also available a form called a Physician Orders for Life-Sustaining Treatment (POLST) that will make a patients treatment wishes an official medical order.
The POLST document has been specially designed to overcome limitations of more traditional advance directives (Bomba, Kemp, and Black, 2012). Specifically, it provides a way through a single conversation for a physician or other health care professional to record the wishes of a patient who is facing a life-threatening illness. Some important differences between POLST and advance directives are that POLST is designed for a seriously ill patient and provides instructions for current care. It can be filled out through conversation with a surrogate, which is not available for advance directives. Furthermore, the portability and periodic review responsibilities lies with the provider rather than the patient and their family, as is the case of advance directives, thus it increases the chance that the form will be up to date and available when needed over the directive document (Bomba, Kemp, and Black, 2012). These aspects make the POLST a more practical document to help improve end of life experiences compared to an advance directive.
The second concrete suggestion is to involve communities in the end-of-life wishes recording process (Kreiger, 2013). Some states, such as Oregon are advanced in this process, having a statewide POLST registration system. Another program, located in Wisconsin, enacted a program called “Respecting Choices” and in a small community achieved an amazing 96% of people dying with end of life choices known, which resulted in significantly lower end of life medical costs. Programs such as “Respecting Choices” or the Oregon statewide recording mandate could be more widely instituted and help reduce end of life cost while simultaneously better respecting patient wishes, with the goal of providing a better quality of death experience.
For the third concrete suggestion, Kreiger supports doctors being more open with describing the choices that patients approaching end of life (2013). Again, this may be a function of denial, or in the case of doctors, a perception of admitting failure with such conversations, but it remains a reality that patients are going to die. This process of dying is going to cost money but with the ability to effectively present bad news and follow up with difficult choices, the process can be better served for everyone. Classes to teach these kinds of communication skills are becoming part of medical school (Landro, 2013), and such practical education is a very positive step in the direction of empowering doctors and patients to work together to solve this current limitation within the medical field.
A study conducted to determine whether there was any statistically significant connection between having an end-of-life conversation with a doctor and reduced costs was able to find such a link (Zhang et al., 2009). This study found that after taking into account other variables that could alter the data including socio-demographic characteristics, illness acceptance, and treatment preferences, those patients that had end-of-life discussions with their physicians averaged 35.7% lower medical costs at the end of their life. Furthermore, relatives of those that had higher costs reported worse quality of death for their patient in their final week. Thus, benefits of the conversation included both lower costs and a better death experience as perceived by the surviving relatives (Zhang et al., 2009).
A further recommendation is to include insurance payment to the doctor to have these needed conversations (Kreiger, 2013). Although this issue became an ethical nightmare when previously addressed within insurance legislation, as it turned into a debate concerning how doctors should determine who deserves treatment and who does not, it is possible that this approach could avoid that ethical landmine this time around and truly provide a benefit to end of life issues. Current commentators are still noting the inability of legislatures to address this issue without the outwardly economic discussion devolving into a larger societal debate about withholding medical care (Wasik, 2012). Despite this legislative squeamishness, this topic will have to be addressed if the cost issues driving the need for Medicare reform are to be brought under any sort of control, given the clear role that end-of-life costs have in the cost overruns. Unfortunately, Wasik also notes that there is no indication that this upward trend in end-of-life costs will be flattening out or decreasing anytime soon, thus it is important that this issue be given true debate and consideration now.
Along these lines, Kreiger advocates for reconsideration of certain highly aggressive treatments in patients that are covered by Medicare (2013). This is obviously a highly sensitive area where a doctor’s skill in understanding what likely outcomes will result is tested to its fullest. But some geriatricians are advocating tougher lines between what will be paid for and will not be paid for by Medicare, because of evidence-based studies of showing questionable benefit for older patient. Necessarily, these types of studies must also be executed in order to have this base of data to draw from. But even when such studies have been performed, sometimes doctors do not use the information as they are ineffective gatekeepers. For example, Krieger states that bevacizumab (Avastin), an expensive lung cancer drug that costs $80,000 to $100,000 has been shown to have uncertain benefits to patients over 65 (Roehr, 2012), yet doctors still prescribe it to patients in this age group and Medicare still pays for it. This is obviously a case-by-case analysis, but the data to make such decisions should be gathered and insurers, doctors, and hospitals need to use this data to make better decisions for their patients.
Although there is definitely a value judgment in this terminology, what is to be avoided is what is called “futile care” (Emanuel and Emanuel, 1994). Needless to say, where the line is drawn between futile and not futile care is controversial. In studies looking at the economic impact of futility decisions, commentators have found that doctors tend to define it similarly to how judges define pornography -- they know it when they see it (Truog, Brett, and Frader, 1992). Unfortunately this kind of definition is not useful to the debate, however realistic it may be. In end-of-life decisions this futility can be manifest in persistent vegetative state, through do not resuscitate (DNR) orders, or through organ replacement therapies such as ventilators. As with many issues on the limitations of medicine, these considerations raise problems of both value (economic cost) and of probability, but both of these areas must be resolved to find a true position that will allow what is futile care to be avoided (Truog, Brett, and Frader, 1992).
In this “futile care” debate there is also the need to take into account of the costs of developing drugs that could be administered and the need to continue to provide economic motivation for drug companies to continue investment into such treatments. Current estimates is that it costs approximately $4 billion dollars and maybe as much as $11 billion to bring a new drug onto the market (Herper, 2012). This estimate takes into account the current failure rate for approval of drugs which is extremely high, resulting in a true estimate including what is spent on a number of drug candidates to bring just one to the market. Although the blockbuster profits of pharmaceutical drugs make for good targets within this discussion, there is also a need to balance the incredibly high amount of investment needed to shepherd the drug through the initial discovery, pre-clinical, and clinical standards as well as marketing costs that must be met before any money can be made.
Therefore the current outcry to reduce the cost of drugs, particularly cancer drugs (Chustecka, 2013), needs to be realistically balanced with the ability to continue providing economic incentive for companies to sink these enormous amounts of money into the search for a drug that can survive the rigors of testing to make it on the market to treat patients. A frank examination of the impact of end-of-life use of these drugs needs to be done to ensure whatever changes would be adopted these guidelines would not be what that tipped the scales away from continued investment on the part of pharmaceutical companies as this investment needs to be maintained to ensure development of the drugs of the future.
Nevertheless, there are further steps that are less controversial that can be taken to improve the quality of end-of-life and reduce costs. Kreiger suggests an expanded use of comfort care for patients during their final days. Although such care definitely exists, the standards are non-existent and the communication of the availability of such care can be lacking. This responsibility lies with the hospital and several are taking the lead in developing standards for the provision of comfort care and the communication of its availably to patients and their families.
Comfort care is defined as providing care during the end-of-life in four areas – physical comfort, practical tasks, mental and emotional needs, and spiritual considerations (National Institute on Aging, 2013). Physical comfort care can include the management of pain, breathing problems, skin issues due to pressure, digestive issues, lack of temperature maintenance, and fatigue. Mental and emotional comfort care can involve dealing with understandable anxiety or depression. Practical tasks involve aid in day-to-day care as the ability to take care of personal hygiene, dressing, and mobility began to deteriorate. End-of-life can also be a time when spiritual issues take a forefront and family can become very important. All of these factors can play into a desire to be home as opposed to an institutional setting (National Institute on Aging, 2013).
One of the biggest issues with home-based comfort care is the lack of insurance coverage for this kind of care beyond the free labor of family members. Ironically, Medicare will pay for a stay in the hospital in an extremely expensive intensive care unit bed but it will not cover care within the patient’s home, should that be their wish (Kreiger, 2013). Although ideally a family member would be available to provide such care, particularly in an end-of-life situation, this is not a realistic economic situation for those both caring for an older family member and earning a living for their own family. Kreiger therefore urges reform to the Medicare system to allow there for a choice to be made for the less expensive approach (2013), which may well pay for itself in reduced hospital admissions during end-of-life timing.
Increased use of hospice care is an idea that has been promoted in relation to this issue for a long time (Emanuel and Emanuel, 1994). Certainly, surveys indicate that hospice care and dying at home are choices being utilized more than in the past, but there are still significant issues with its use. One of the greatest issues is that hospice care is being presented as a choice too late, and therefore it gets under-utilized as a possible choice for end-of-life experience. Furthermore, surveys have indicated that hospice use may not be the cost-saver that it once was considered and is not the patients first choice for their end of life experience (Wasik, 2012). In particular, a recent survey noted that despite a stated preference by patients to die at home, the majority still does die in an institutional setting (Teno et al., 2013). One concern cited by the survey was lower quality of care provided in hospice and institutional settings as compared to care at home. Again, if patient wishes are to be respected, changes should be implemented to change these figures.
A further issue with insurance for hospice care is that it ties reimbursement for this kind of facility to a decision to no longer seek a cure, something that many patients, even when faced with the reality of end-of-life, is unwilling to decide. However, there are isolated examples of changes to this policy that have resulted in monetary savings. Kreiger reports a program by the Aetna Insurance Company called “Compassionate Care Enhanced Hospitals” that allows a continuation of treatment even while enrolled in a hospice. This choice is available to patients given less than 12 months to live, and has proven to decrease emergency room and intensive care treatment costs (2013). Creative programs such as these, whether by private insurance companies or through legislative changes to governmentally provided insurance will help to make cost-savings such as these available to a wider population.
In summary, Kreiger makes a very valid point in stating that “[u]ltimately, the cure is acknowledging that pointless suffering, not dealth, is the foe” (2013). There are many issues in the end-of-life scenario that involve looking directly at the limitations of medicine both from a curative point of view as well as a reasonable economic spending point of view. This paper has provided the results of a yearlong study that has some extremely concrete and actionable suggestions to help improve this situation on a patient-by-patient basis. It also provides specific suggestions to various professionals and institutions involved in end-of-life care including doctors, hospitals, private and governmental insurance providers. Although difficult to face, end-of-life decisions will someday be realistic for everyone, and by facing these limitation-exposing situations head on, patient wishes can be more commonly followed, costs of futile care can be reduced, and quality of death experiences can be improved.
Works Cited
Bomba, PatriciaA., Marian Kemp, and Judith S. Black. “POLST:An Improvement Over Traditional Advance Directives.” Cleveland Clinic Journal of Medicine. 79 (2012): 457-64. [Print]
Chustecka, Zosia. “High Price of Cancer Drugs Is Harming Patients.” Medscape Today. 1 May 2013. [Web]. 6 August 2013.
Emanual, Ezekiel J. and Linda L. Emanuel. “The Economics of Dying.” New England Journal of Medicine. 330 (1994): 540-44. [Print].
Herper, Matthew. “The Truly Staggering Cost of Inventing New Drugs.” Forbes. 10 February 2012. [Web]. 6 August 2013.
Kelly, Amy S. et al. “Out-of-Pocket Spending in the Last Five Years of Life.” Journal of General Internal Medicine. 28 (2013): 304-9. [Print].
Kreiger, Lisa. “Cost of Dying: Discovering A Better Way for Final Days.” Silicon Valley Mercury News. 29 December 2012, updated 10 April, 2013. [Web]. 6 August 2013.
Landro, Laura. “The Talking Cure for Health Care.” Wall Street Journal. 8 April 2013. [Web]. 6 August 2013.
National Institutes on Aging. “Providing Comfort at the End of Life.” 26 June 2013. [Web]. 6 August 2013.
Roehr, Bob. “Bevacizumab as adjuvant therapy for lung cancer does not help patients over 65.” British Medical Journal. 344 (2012):e2855. [Print].
Teno, Joan M. et al., “Change in End-of-Life Care for Medicare Beneficiaries.” Journal of the American Medical Association. 309 (2013): 470-7. [Print].
Truog, Robert D., Allan S. Brett, and Joel Frader. “The Problem with Futility.” New England Journal of Medicine. 326 (1994): 1560-4. [Print].
Wasik, John F. “Tackling End-of-Life Costs.” The Medicare NewsGroup. 4 October 2012. [Web]. 6 August 2013.
Zhang, Baohui et al., “Health Care Costs in the Last Week of Life: Associations with End-of-Life Conversations.” Archives of Internal Medicine. 169 (2009): 480-8. [Print].
Loscalzo, Mathew. “Palliative Care: An Historical Perspective” 1 January 2008. [Web]. 1 September 1, 2013
(n.p) (n.d) News Medical. “Palliative Care History” [web] 1 September 2013
