Week 13: 4/11-4/17-Sustaining and Funding Innovation

So far in this blog we have examined the historical and contemporary issues revolving around palliative care and H.R. 3119. Today, for the final post we are going to move into the future to explore how these policy changes can be funded and sustained. The sustainable perspective of this policy is partially built into the foundation of the bill. Because the bill seeks to improve research and educate health care workers at the university level it sets itself up for long term success (1). By reaching physicians, nurse, etc at the base of education, those individuals can be expected to carry the information with them throughout their careers while simultaneously sharing and educating others. The gumption supporting the inclusion of palliative focused education in schools is partially dependent on the financial incentives suggested by H.R. 3119.(1). Having continued financial support optimizes the chance that schools will adopt palliative programs and maintain these programs over time. Similarly, palliative care research is an investment that will pay off in the long run. By taking the time and resources now, we can expect to find new information and evidence that can be translated to practice to maximize the positive outcomes for those experiencing chronic illnesses.

That being said, the long term financial infrastructure supporting the bill is not as apparent. H.R. 3119 stipulates additional funding for palliative care research as well as grants provided to institutions and individuals to promote palliative care education and application (1). Thus, the financial implications of the legislation are imperative to examine. In regards to the allocation of finances to additional research, the bill does specify that this action will merely utilize existing funds and simply direct the National Institute of Health to conduct more extensive research on the topic (2). However, the allocation of funds for grants would require additional funding not currently in existence. For both aspects of the bill, the determination for funding is influenced heavily by the Congressional Budget Office. This nonpartisan organization produces “independent analyses of budgetary and economic issues to support the Congressional budget process” (3). Additionally, the CBO formulates probable financial estimates associated with legislation currently navigating the political process (3). Because H.R. 3119 remains in the committee phase of the process, its financial analysis has not yet been completed by the CBO. While palliative care is an issue that is imperative to address, there are a multitude of other health concerns that are also seeking increased funding and resources. In 2013, 17.4% of the GDP was allocated for health care and this number is expected to climb to 19.6% by the year 2024 (4). Because of the significant number of needed health changes, it is imperative to establish potential financial benefits that can be presented to policy makers.

The healthcare spending portion of the GDP continues to climb

As previously eluded to, the optimization of palliative care in the clinical setting holds the possibility of significant cost savings long term which will ultimately relieve some financial burden on the health care system. Revisiting statistics previously cited in this blog, we recall that 2/3 of Medicare expenditure goes to those with chronic illness and 25% of all Medicare spending is utilized for individuals in the last year of life (S. Winn-McCorkle, personal communication, February 22, 2016; 5). With the addition of palliative care, time spent in intensive care units and number of hospital readmissions have been shown to decrease (S. Winn-McCorkle, personal communication, February 22, 2016). Because palliative care focuses on symptom management that is guided by the individual; unnecessary tests, medications, and overall costs are reduced (S. Winn-McCorkle, personal communication, February 22, 2016). Furthermore, “Patients who received palliative care incurred $6,900 less in hospital costs during a given admission than a matched group who received usual care” (6). Focusing on long-term financial stability, with the investment of funds up front, policy makers can expect to see long term cost savings in addition to the positive outcomes regarding quality of life.

Photo Credits (in order of appearance)

  1. https://www.differencecard.com/FSAAccounts/Healthcare
  2. http://www.shockmd.com/2009/03/12/when-to-make-powerpoint-slides-available-to-students/
  3. http://healthaffairs.org/blog/2011/09/19/a-brief-history-of-health-spending-since-1965/
  4. http://www.news957.com/2016/02/25/federal-government-to-receive-report-on-physician-assisted-dying-thursday/

References:

  1. (2016). H.R. 3119: Palliative care and hospice education and training act. Retrieved from https://www.govtrack.us/congress/bills/114/hr3119
  2. American Cancer Society Cancer Action Network. (2015). Palliative care and hospice education and training act, H.R. 3119. Retrieved from http://www.acscan.org/content/wp-content/uploads/2013/11/PCHETA-bill-summary-HR-3119.pdf
  3. Congressional Budget Office. (2016). Overview of CBO. Retrieved from https://www.cbo.gov/about/overview
  4. Centers for Medicare and Medicaid Services. (2015). National health expenditure projections 2014-2024: Forecast summary. Retrieved from https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/Downloads/proj2014.pdf
  5. Kaiser Family Foundation (KFF). (2015).10 FAQs: Medicare’s role in end-of-life care. Retrieved from http://kff.org/medicare/fact-sheet/10-faqs-medicares-role-in-end-of-life-care/
  6. Morrison, S., Dietrich, J., Ladwig, S., Quill, T., Sacco, J., Tangeman, J. & Meier, D. E. (2011). Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Affairs, 30(3), 454-463.
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Week 11: 3/28-4/3- Technology and Palliative Care

The need for palliative care has been highlighted throughout this blog, primarily focusing on the quality of life and cost savings perspectives. It is also essential to examine the palliative care provider shortage and how technology is advancing to address this problem as it continues to grow with the impending “silver tsunami.” For example, in California, only 0.9% of all physicians and 0.3% of nurses are certified in palliative care (1). When examined in the context of the needs of the population and comprehensive nature of palliative care, it is clear that technological solutions are needed.

Some general systems currently being used and researched include “remote monitoring devices, telephone, videoteleconferencing (VTC), and mobile devices” (1). Within these umbrellas, providers are able to deliver “out-of-hours telephone support, advice services, […] consultations, and assessments” (2). The discussion on these technological advances is a blog in of itself, but in general these programs allow patients to have access to their provider and other health services remotely. Many telehealth systems allow providers to serve a greater number of patients and meet the needs of patients who struggle to travel to clinics for evaluation (1).

close up of male doctor holding smartphone with medical app
Technology may hold the key to the future of palliative medicine

A specific technological innovation that may be a significant game changer for palliative care is known as EIR (3). I wanted to highlight this tool specifically as it aims to address pain which is one of the most significant symptoms managed by palliative care and of personal interest to me and my doctoral project. The EIR software is used for pain monitoring and management (2). It serves the function of supplying the provider with a “summary of the patient’s condition along with suggestions for further investigation and recommended treatment” (3). The software is comprised of medical guidelines and information entered manually by the patient (3). By combining all of the information into one program, researchers hope to optimize symptom management and longevity of life (3).

EIR.jpg
EIR advances the way providers manage pain

Because of the lack of provider education in the field of palliative medicine, technology has and will continue to serve as a medium to expand the number of providers being trained on palliative care. Through applications and software, health care professionals have improved access to palliative care education and training (3). An example of a project actively using technology to educate health providers on palliative care is Project ECHO (1). The project aims to increase the number of individuals trained in palliative care to decrease the provider shortage in this specialty (1). Similarly, technology can increase research in the area of palliative medicine. Technology allows researchers to gather data and monitor outcomes in the palliative care population (4).

ECHo
The ECHO Project uses technology to increase palliative care training and education

Some challenges met with advent of many of these technologies include concerns over privacy, security, and ease of use (2).  Privacy and confidentiality are always a concern as technology can serve as possible break in the system, potentially exposing important and sensitive health information. As technology continues to advance, it is crucial that necessary precautions are always taken to ensure that information is encrypted and secure, minimizing the risk of information breaches (2).  Furthermore, devices and programs need to have interfaces that are simple to learn to meet the needs of an already overburdened population (2). With the increase in technology’s presence in palliative care, it is also important to take a step back to address the issue of who is able to access and use these technologies. Lower income and vulnerable populations are less likely to have computer, tablets, smart phones, etc and therefore may not have access to the varying degrees of telemedicine (2). This of course further expands health disparities already burdening our communities (2). Finally, there is consistently a concern voiced over the “depersonalization” of care with the use of health technologies. These concerns are important for providers to address and ensure that they are still spending one-on-one time with patients in conjunction with touching base via telehealth.

2015-04-29-mhealth-implementation-obstacles.png

Photo Credits (in order of appearance):

  1. https://gr-wordpress.s3.amazonaws.com/2014/05/telemedicine-Grand-Rounds-Health.png
  2. http://www.mesothelioma.com/images/blog/posts/Technology_for_Cancer.jpg
  3. https://www.ntnu.edu/news/2012-news/palliative-care-congress
  4. http://echo.unm.edu/
  5. http://wac.1a76d.edgecastcdn.net/801A76D/mhealth/images/site/articles/2015-04-29-mhealth-implementation-obstacles.png

References:

  1. Ayers, K. J. (2015). Innovative use of technology for palliative care. Retrieved from http://www.onclive.com/web-exclusives/innovative-use-of-technology-for-palliative-care/1
  2. Reis, A., Pedrosa, A., Dourado, M., & Reis, C. (2013). Information and communication technologies in long-term and palliative care. Procedia Technology, 9(2013), 1303-1312. doi: 10.1016/j-protcy.2013.12.146.
  3. Norwegian University of Science and Technology. (2012). Palliative care congress showcases cutting edge technology. Retrieved from https://www.ntnu.edu/news/2012-news/palliative-care-congress
  4. Kamal, A. H., Swetz, K. M., Dy., S., Tien, A. Y., Temel, J. S., & Abernethy, A. P. (2012). Integrating technology into palliative care research. Current Opinion in Supportive and Palliative Care, 6(00), 1-8. doi: 10.1097/SPC.0b013e32835998c6

Week 9: 3/14-3/20-The Role of the Private Sector

While the previous post focused on the public sector influence on palliative care, this week will transition the focus to the private sector which is composed of companies, organizations, and individuals who are not under the umbrella of the government.

As I highlighted previously, a few organizations significantly paved the way for Palliative care and promoted for its motion from obscure to mainstream. The National Hospice and Palliative Care Organization (NHPCO) has worked tirelessly to advocate for and educate the public on palliative care to optimize end of life care and quality of life (1, 2). Other key private sector organizations that originally played a role in promoting palliative care as a specialty include the Robert Wood Johnson Foundation (RWJF) and the George Soros’ Open Society (GSOS) (3). RWJF serves as an organization on the verge of the future of health care by supporting research and innovative ideas for the advancement of multiple health topics, including palliative care (4). Similarly, the GSOS has advocated for recognizing and “responding quickly to the challenges and opportunities of the future” (5).  While GSOS encompasses a variety of topics including media and governance, they include health outcomes (i.e. palliative care) as one of their primary focuses (5).  Another important private sector organization that produced the original palliative care guidelines is the National Consensus Project for Quality Palliative Care (3).Logo_horizontal

When discussing palliative care, it is imperative to recognize the work of the Center to Advance Palliative Care (CAPC). This organization focuses mainly on the implementation and incorporation of palliative care into various health systems and organizations (6). Another important private sector organization that has significantly promoted the advancement of palliative care and H.R. 3119 is the American Academy of Hospice and Palliative Medicine (AAHPM) which is a membership organization aimed to advance palliative care through “education and training, resources, networking, and advocacy” (7).

It is important to note that the AAHPM and NHPCO worked together to create an imperative and ground breaking organization known as the National Coalition for Hospice and Palliative Care (NCFPC) (8). This coalition has gradually included multiple organizations to create a strong and united force to promote and advocate for palliative care (8). Furthermore, this coalition is on the forefront of policy and regulatory movements including H.R. 3119 (8).

On the other end of the advancement of palliative care is the National Palliative Care Research Center (NPCRC). This organization is unique as it is the first establishment to create an environment for the collaboration of small scale investigators conducting research in the area of palliative care (9). This is significant because palliative care research remains an under-acknowledged focus that is often ignored by large research corporations. By facilitating the exchange of information between current researchers, this organization is able to actively advance the specialty of palliative care (9).

It also important to acknowledge organizations who have not only supported palliative care as a specialty but have acknowledged open support for H.R.3119. These include the following:

-American Cancer Society Action Network

-American Geriatric Society

-American Academy of Pain Management

-American Heart Association/American Stroke Association

-Hospice and Palliative Nurses Association

-National Association of Social Workers

-St. Baldrick’s Foundation

-Visiting Nurses Associations of America

-Oncology Nursing Society (10)

While the advancement of palliative care and H.R.3119 is dependent on the public sector and policy; private sector organizations have paved the way and continue to advocate and lobby for the much needed changes at the government level.

 

Photo Credits (in order of appearance):

Header: http://www.chpcc.org/education-research/hope-magazine/hope-magazine-                           2012/hope-magazine-2012/

  1. https://ickhmer.wordpress.com/2015/01/25/private-sector-in-cambodia-has-yet-to-become-a-critical-development-partner-in-extractive-industry/
  2. http://www.nhpco.org/nhpco-0
  3. http://www.broadcastnewsresource.com/news/Healthcare-Quality-RWJF
  4. http://ec-cdn-assets.stitcher.com/customfeedimages/480x270_54441.jpg
  5. http://www.nationalconsensusproject.org/
  6. http://www.hopetels.com/pitchers/palliative-care-image.gif
  7. https://media.licdn.com/media/AAEAAQAAAAAAAAYRAAAAJDZhMmNjNGJjLWE1YjgtNDA2Zi1iYjRkLWZhNTAyZmVkOWY3Mg.png
  8. http://aahpm.org/templates/AAHPM/img/logo.png
  9. http://www.nationalcoalitionhpc.org/wp-content/uploads/2015/01/logo_nchpc2.jpg
  10. http://www.nationalconsensusproject.org/images/logo_npcr.png
  11. http://www.nytimes.com/2016/02/16/health/in-palliative-care-comfort-is-the-top-priority.html?_r=0

References

  1. Connor, S. R. (2007). Development of hospice and palliative care in the United States.OMEGA, 56(1), 89-99. doi: 10.2190/OM.56.1.h
  2. National Hospice and Palliative Care Organization. (N.D.). National hospice and palliative care organization. Retrieved from http://www.nhpco.org/nhpco-0
  3. Loscalzo, M. J. (2016). Palliative care: An historical perspective. American Society of Hematology Education Book, 2008(1), doi: 10.1182/asheducation-2008.1.465
  4. Robert Wood Johnson Foundation. (2015). How we work. Retrieved from http://www.rwjf.org/en/how-we-work.html
  5. Open Society Foundations. (2016). About us. Retrieved from https://www.opensocietyfoundations.org/about
  6. Center to Advance Palliative Care. (N.D.). About the center to advance palliative care (CAPC). Retrieved from https://www.capc.org/about/capc/
  7. American Academy of Hospice and Palliative Medicine. (N.D.). AAHPM and the specialty of hospice and palliative medicine. Retrieved from http://aahpm.org/about/about
  8. National Coalition for Hospice and Palliative Care. (2014). National coalition for hospice and palliative care. Retrieved from http://advancingexpertcare.org/national-coalition-for-hospice-and-palliative-care/
  9. National Palliative Care Research Center. (2013). About the center. Retrieved from http://www.npcrc.org/content/16/How-is-the-Research-Center-Unique.aspx
  10. American Academy of Hospice and Palliative Medicine et al. (2015). Support letter to Representative Engel and Representative Reed. Retrieved from https://www.socialworkers.org/advocacy/letters/2015/PCHETA_Support_Letter_114th_Congress-150721.pdf

Week 7: 2/22-2/28-The Influence of Public Sector Institutions

Public institutions play a significant role in the success or detriment of both inpatient and outpatient palliative care programs.   Because the vast majority of individuals dying in the United States fall into the Medicare age group, Medicare is the largest insurer for end of life health care (KFF, 2015). This becomes problematic when considering the costs accrued in the last months/years of an individual’s life. Approximately 20% of Medicare beneficiaries are living with at least 5 chronic medical conditions (S. Winn-McCorkle, personal communication, February 22, 2016 ). This number is especially astounding when considered in the context that 2/3 of Medicare expenditure goes to this specific cohort (S. Winn-McCorkle, personal communication, February 22, 2016 ). Furthermore, 25% of Medicare spending is utilized for individuals in the last year of life (KFF).

   2010    ◦ 171 new referrals    ◦ 415 established patient visits      An LCSW was added, split between hospice and pal...
Palliative care serves as an important aspect of the health care team (2)

So how do these statistics relate back to palliative care and the significance of H.R. 3119? To put it simply, all of the groups mentioned above tend to be the best candidates for palliative care (S. Winn-McCorkle, personal communication, February 22, 2016 ). Not only does the addition of palliative care improve quality of life and longevity, but it has been to shown to decrease time spent in intensive care units and hospital readmissions (S. Winn-McCorkle, personal communication, February 22, 2016 ). Furthermore, because palliative care focuses on symptom management that is guided by the needs and wants of the individual, unnecessary tests, medications, and overall costs are often reduced (S. Winn-McCorkle, personal communication, February 22, 2016 ).

Palliative care focuses on symptom management that is guided by the needs and wants of the individual

 

While it is clear that palliative care benefits the Medicare and Medicaid budget, it is essential to examine how these public sectors can maximize the functioning of palliative care. While hospice care has been funded by the Medicare Hospice benefit for many years, palliative care has traditionally had a more difficult time being covered by the public sectors (NIH, 2010). Traditionally, Medicare does not have specific billing in place for palliative care. That being said, some aspects of palliative medicine (i.e. hospital care, treatments, medications, specialists, and social workers), can be billed to Medicare (NIH). However, Medicare beneficiaries are still often responsible for copays and fees which contrasts to the coverage for hospice care (NIH). Medicaid tends to follow suite and reflects the same potential coverage of palliative care services with its own Hospice Benefit (CMS, 2016). This however is even more problematic as the coverage varies from state to state (NIH). Patient access to palliative care varies drastically from region to region building upon existing health disparities as well as the availability of palliative care programs (Giovanni, 2012). Consequently, rural areas and states with smaller hospitals tend to not have established palliative care programs (Giovanni).

The percentage of hospitals with palliative care programs varies from state to state (3)

The Medicare Care Choices Model, introduced in 2014, does play a role in this as well (CMS, 2014). This model allows Medicare beneficiaries who would otherwise qualify for hospice to choose palliative care treatment in conjunction with curative treatments (CMS, 2014). The purpose of this model is to study whether or not this improves the rates of individuals using the Medicare Hospice Benefit as well as the quality of care and satisfaction experienced by patient and caregivers (CMS, 2014).

With the advent of the Affordable Care Act in 2009, the weight of public sectors has become even more prevalent. While hospice care and reimbursement were acknowledged by the act, palliative care reimbursement was not addressed. An executive summary of the Affordable Care Act and end of life care recognizes that while the Affordable Care Act did not specifically acknowledge palliative care, it does identify the need to have “Federal agencies develop a research agenda on palliative care to address issues such as the development of practice guidelines and methods of quality improvement, as well as the exploration of reimbursement options” (GWU, N.D.).

scday2a_wide-42847a1cdcc7cbf62b8a739f0a7156e77c4d7298-s6-c30
The aging population will need palliative care access (4)

As the trend for repayment systems are navigating towards quality assurance, the patient and cost outcomes related to palliative care have an optimistic chance of receiving improved reimbursement specific for the care provided. Moreover, the general consensus from the literature continues to reinforce the need to prioritize federal and state funding for palliative care training and research. Connecting back to H.R. 3119, the bill seeks to not only improve training and research, but additionally seeks to generally improve the awareness of palliative care in the community which also has the potential to contribute to improved reimbursement.

Photo Credits

1. Header photo: https://www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/palliative-care-and-rehabilitation-medicine/index.html

2. http://www.slideshare.net/Kindredhealth/palliative-care-across-the-continuum

3. http://www.slideshare.net/ctsinclair/hospice-palliative-care-missouri-health-net-aug-2009

4. https://publichealthwatch.wordpress.com/2014/03/15/how-the-affordable-care-act-opens-the-door-for-two-vulnerable-populations/

References

Centers for Medicare and Medicaid Services (CMS). (2014). Medicare care choices model. Retrieved from https://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2014-Fact-sheets-items/2014-03-18.html

Centers for Medicare and Medicaid Services (CMS). (2016). Hospice benefits. Retrieved from https://www.medicaid.gov/medicaid-chip-program-information/by-topics/benefits/hospice-benefits.html

George Washington University (GWU). (N.D.). The affordable care act and end of life care: Executive Summary. Retrieved from https://smhs.gwu.edu/gwci/sites/gwci/files/EndofLifeExecSummary.pdf

Giovanni, L. A. (2012). End-of-life care in the United States: Current reality and future promise-A policy review. Nursing Economics, 30 (3), 127-134. Retrieved from https://www.nursingeconomics.net/ce/2014/article3003127134.pdf

Kaiser Family Foundation (KFF). (2015). 10 FAQs: Medicare’s role in end-of-life care. Retrieved from http://kff.org/medicare/fact-sheet/10-faqs-medicares-role-in-end-of-life-care/

National Institutes of Health (NIH). (2010). End of life. Retrieved from http://nihseniorhealth.gov/endoflife/payingforcare/01.html

Week 5: 2/8-2/14-Historical and Contemporary Roles

The concept of palliative care is a relatively modern connotation and much of its history relates directly to hospice care. Hospice care traces back to as early as the 12th century where “hospices” were maintained by religious oversight and provided aid and care to the ill or dying (PCCSA, 2012). This concept continued on and off until the 19th century in the United Kingdom and France where religious orders cared for both the terminally ill and those who were deemed incurable (PCCSA).

Palliative care as a specific specialty came to the forefront in the 1950’s when Dr. Cicely Saunders recognized the need for an interdisciplinary team to manage the “total pain” that a dying person experiences (Loscalzo, 2016). By 1960, the concepts of modern palliative care and hospice were still met with resistance. In 1963, Saunders came to the United States from London to give a series of lectures to the Yale School of Nursing regarding hospice and palliative care (Connor). In 1969, Dr. Elisabeth Kubler-Ross published a book discussing an approach to the care of dying individuals that included “respect, openness, and honest communication” (Loscalzo). She recognized the need to listen to the needs of patients in their final stages of life and driving care based on this. In 1973, the United States hosted its first Hospice center located in Connecticut (Connor). While the concepts were in play for centuries, the actual term palliative care was coined in 1974 by Dr. Balfour Mount as a means to avoid the negativity often surrounding hospice care. He focused on a holistic approach to patient care which included “physical, psychological, social, or spiritual distress”’ (Loscalzo). Furthermore, he delineated between hospice care by concentrating on individuals with “chronic or life-limiting diseases” (Loscalzo). While palliative care and hospice are two separate focuses, their historical foundations often go hand in hand. It is therefore important to note that the National Hospice Organization formed in 1978 after a series of national meetings (Connor, 2007). This organization would later become the National Hospice and Palliative Care Organization (Connor).

In the late 1970s to early 1980s the Center for Medicaid and Medicare Services (known then as the Health Care Finance Administration) initiated a project that studied the efficacy of hospice care in the United States (Connor, 2007). This was significant as the findings led to the creation of the Hospice Medicare Benefit in 1982 (Connor). This benefit was aimed at providing reimbursement for hospice care providers, however the initial benefit was only provisional and did not become permanent until 1985 (Connor)

Jumping forward to 1997, we saw the release of a report from the Institute of Medicine titled “Approaching Death: Improving Care at the End of Life” (Field & Cassel, 1997). This document recognized the inadequate state of end of life and palliative care management in the United States health care system, primarily with the advent of ever developing technology designed to delay the onset of death (Field & Cassel). Other key stakeholders and advocates around the same time included the Robert Wood Johnson Foundation and the George Soros’ Open Society institute (Loscalzo, 2016). These key players promoted the transition of palliative care from obscure to mainstream (Loscalzo).

By 2004, the National Consensus Project for Quality Palliative Care produced a set of guidelines for palliative care (Loscalzo, 2016). These guidelines continued to outline the care provided by palliative care in addition to further delineating between hospice and palliative care (Loscalzo). All of these movements led to a significant increase in palliative care programs from 632 in 2000 to 1,240 in 2006 (Connor, 2007).

The specialty continued to advance when in 2006 the American Board of Medical Specialties and the Accreditation Council for Graduate Medical Education officially recognized the medical sub-specialty of “Hospice and Palliative Medicine” (Loscalzo, 2016). At this point in the historical timeline, there were already 57 fellowship programs nationwide that focused on palliative medicine. In 2008, the American Board of Medical Specialties gave their first certification examination in palliative medicine (Loscalzo).

Transitioning back into current events, the primary issues still thwarting the progress of palliative care include the need for training for health care professionals, national policies, and availability of adequate pain management (Lucas, N.D.).

Photo Credit

Header photo: http://www.stjh.org.uk/about-us/our-history

References

Connor, S. R. (2007). Development of hospice and palliative care in the United States. OMEGA, 56(1), 89-99. doi: 10.2190/OM.56.1.h

Field, M. J., & Cassel, C. K. (1997). Approaching death: Improving care at the end of life. Washington, D.C.: National Academy Press

Loscalzo, M. J. (2016). Palliative care: An historical perspective. American Society of Hematology Education Book, 2008(1), 465. doi: 10.1182/asheducation-2008.1.465

Lucas, S. (N.D.). Palliative care: Issues and challenges. Retrieved from http://www.who.int/3by5/en/palliativecare_en.pdf

Palliative Care Council South Australia. (2012). History of palliative care. Retrieved from http://www.pallcare.asn.au/about/history-of-palliative-care

Week 3: 1/25-1/31-Ethics in Policy

Ethics not only drive the care that patients receive, but they dictate the actions and changes that can be made from a legislative perspective.

The four guiding principles of medical ethics are autonomy, justice, beneficence and nonmaleficence (Longest, 2016).

These principles translate into health and health policy by recognizing that American citizens have the right to make their own health decisions and to fair and equitable care (Longest, 2016). Furthermore, health care workers and policy makers need to emphasize the importance of doing what is best for patients and avoiding harm (Longest). Both the implementation and application of new legislation or policy have ethical considerations and potential consequences (Longest). Policy makers must always consider the ethics of policies and potential outcomes, both positive and negative. Furthermore, the individuals in both the public and private sectors who play a role in the influence and decision making for policies are subject to expectations and repercussions associated with ethical dilemmas (Longest).

 

Picture 1: Palliative care can make the difference between suffering and comfort

H.R. 3119 is not exempt from these principles and an examination of the bill’s basic concepts reflects its ethical grounding. Palliative care and hospice care are centered on the concept of achieving quality of remaining life and a “good death” (Mohanti, 2009). Beneficence and nonmaleficence relate directly to H.R. 3119 as the bill seeks to improve the quality of palliative care by increasing and promoting education and research in this area. The ultimate goal of the bill is to achieve better palliative care and quality of life for those suffering through a burdening illness or disease.  Palliative and hospice care serve as an option for individuals entering the final stages of their lives by preserving and promoting autonomy in medical decision making (Callahan and Lawler, 2012). That being said, autonomous decisions are only as good as the ear that will hear them. Mohanti (2009) recognizes that the cornerstone of ethical end of life and palliative care is related to communication between family, patients, and the health care team. Providing patients and families with the correct information about options and applying the concept of autonomy leads to a better premise of care that is patient and comfort driven. From a provider perspective, the ability to provide this experience for patients is dependent on background knowledge. For example, pain is one of the most predominant symptoms confronted by palliative care, affecting 52-77% of patients with a terminal illness (Jubb, 2002). However, as Fishman (2007) identifies, pain is often undermanaged in this population. Mohanti identifies that one of the influencing factors to this problem is a lack of provider knowledge and skills for pain assessment. This concept was recognized throughout my research and project implementation. During my implementation phase, I found that the majority of nurse practitioners surveyed were not using a standardized pain assessment tool and were not given dementia specific training. In order to properly identify and manage the burdening symptoms of terminal illnesses, health care workers need to first establish a foundation of information.

Picture 2: Ethics often complicate decision making and health policy but are necessary to preserve patient integrity

Another important note to consider is the nature of research for the palliative care population because the bill seeks to improve funding for research.  The ethical competency of palliative care research often becomes murky because of the vulnerability of this population (Jubb, 2002). One struggle that I encountered when conducting a literature review and evidence synthesis for my project was the lack of articles that ranked higher on the evidence hierarchy, such as randomized control trials. When it comes to researching palliative care, the ethical concern centers on withholding a symptom management from a group who is in distress. Jubb (2002) reflects this issue by discussing the impracticality of higher ranked research in palliative care and negating the concept that no research is necessary. Jubb discusses the importance of conducting qualitative and observational research to achieve evidence based care that is based on the best interest of patients. In the age of evidence-based practice, why would palliative care be any exception to the rule? From an ethical perspective, funding and supporting research in this area would logically improve the beneficence sought after for our patients.

Picture credits:

  1. http://cdn.aarp.net/content/dam/aarp/health/doctors_hospitals/2011_06/200-bed-of-nails-pain-management.imgcache.rev1306444919975.web.jpg
  2. http://www.rsrevision.com/images/calvin_ethics.gif
  3. Header photo:  http://www.entnet.org/sites/default/files/styles/panopoly_image_original/public/Ethics2.jpg?itok=Rl8tSBhX

References

Callahan, D. & Lawler, P. A. (2012). Ethics and health care: Rethinking end-of-life care: Discussion document. Retrieved from http://thf_media.s3.amazonaws.com/2012/pdf/CPI_DP_04.pdf

Fishman, S. M. (2007). Recognizing pain management as a human right: A first step. Anesthesia and Analgesia, 105(1), 8-9.

Jubb, A. M. (2002). Palliative care research: Trading ethics for an evidence base. Journal of Medical Ethics, 28, 342-346.

Longest, B. B. (2016). Health policymaking in the United States (6th ed.). Chicago, IL: Health Administration Press

Mohanti, B. K. (2009). Ethics in palliative care. Indian Journal of Palliative Care, 15(2), 89-92.