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Editorial |

When It Is Personal: The Universal Need for Palliative Care FREE TO VIEW

Linda S. Efferen, MD, FCCP
Author and Funding Information

FINANCIAL/NONFINANCIAL DISCLOSURE: None declared.

Office of Population Health, Clinical Medicine, Stony Brook Medicine, Hauppauge, NY

CORRESPONDENCE TO: Linda S. Efferen, MD, FCCP, Suffolk Care Collaborative, Office of Population Health, Stony Brook Medicine, 1383 Veterans Memorial Hwy, Hauppauge, NY 11788


Copyright 2016, American College of Chest Physicians. All Rights Reserved.


Chest. 2017;151(1):9-10. doi:10.1016/j.chest.2016.08.1455
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Published online

In this issue of CHEST, Rush and colleagues add to a body of work that demonstrates a continued gap in the utilization of palliative care (PC). The authors’ objective was to investigate the use of PC in patients with end-stage COPD on home oxygen hospitalized for an exacerbation. Advanced care planning (ACP) and referral to PC for individuals with advanced COPD, and other chronic potentially life-limiting conditions, is an established recommendation.,,

FOR RELATED ARTICLE SEE PAGE 41

The results as presented by the authors evince optimism: the use of PC was noted to increase 4.5-fold between 2006 and 2012. However, the actual number of PC consultations (3,145) from the cohort of patients with COPD on home oxygen who met inclusion criteria (181,689) represents only 1.7%. This number simply and eloquently portrays the daunting and continuing gap that remains between recommendations and the reality of what occurs in the community and at the bedside. Despite policies and initiatives enacted in an effort to effect change more than a quarter century ago, barriers to widespread adoption and use of ACP continue to be identified and are extensively discussed with limited impact.

This editorial is an opportunity to highlight and reiterate the call to mitigate the discrepancy between identified need and delivery while acknowledging barriers, challenges, and new efforts. In New York State, where I live and work, many are looking to encourage widespread use of Medical Orders for Life-Sustaining Treatment (MOLST) and hoping to engage providers, hospitals, skilled nursing facilities, and others in the adoption and use of Electronic Medical Orders for Life-Sustaining Treatment to support the communication of complex decisions across the patient’s continuum of care. In other states, Physician Orders for Life-Sustaining Treatment are used.

Although all of the foregoing is relevant, I had a recent personal opportunity to initiate a MOLST form on behalf of my father for my mother. Far from an advanced directive, it was executed under emergency conditions and initiated by the family. Although difficult, it was the right thing given the circumstances, and the hospital staff rallied to our request. However, here is the rub…if I had not had both clinical and personal experience with advanced directives, if I had not known how futile CPR would be in my mother’s situation, if I had not initiated the discussion with my family, and if I had not been available, I am relatively certain that the topic would not have been broached.

In both lay and scientific publications it is perceived that how doctors choose to die may be different from nonphysicians, and medical providers more often endorse advanced directives and/or forego aggressive intervention when faced with a terminal diagnosis.,, It is almost like insider trading. Physicians may use knowledge to, if not achieve a better death, have more control over what occurs: informed by direct experience with and understanding of the limits of medical intervention.

How Can We Change the Status Quo?

Neither mandates nor incentives that require providers to offer advance directive discussions or resources or facilities to use MOLST forms have significantly impacted penetrance. What if we marketed directly to consumers? As consumers we are frequently educated on the latest cutting-edge nongeneric medication via commercial advertising and informed in exquisite detail that while serious side effects could occur, which could be severe, including a risk of death, we should talk to our doctor to see if this could be just what is needed! Everyone will face a certain death at some time uncertain. Would not the opportunity to discuss with a health care professional where, how, and under what conditions end of life should occur, based on individual values and choices rendered in a culturally appropriate manner, be just what is needed? Even knowing that there is choice is often the beginning of the dialogue when initiating ACP discussions. ACP also supports surrogate decision-makers by relieving some of their decision-making burden and allowing a greater likelihood that an individual’s preferences will actually be honored.

Although not easy to accomplish, I am convinced we have the capacity to develop and offer education and posit guidelines for limits on what could or should be done based on individual preferences. The first step is to recognize that ACP and goals of care discussions are very important and not to equate ACP with end-of-life care. The responsibility to introduce ACP should not solely rest with primary care providers, or even specialty providers, inclusive of PC. It is to a large extent a societal issue. As health care professionals we assuredly need to be in the conversation with our patients, to answer any questions that may arise, and to put into context any health conditions that may exist.

Interestingly, my mom had no significant health issues. A reasonably healthy 85-year-old woman, active and living independently with my dad, she presented to the hospital in septic shock, with multisystem failure and an initial lactate of 10. I know the statistics. I knew she would never go back to the person she was even in the unlikely event her hemodynamic status could be stabilized. Although we had not done a MOLST form (I am after all her daughter and not her health care provider), we had discussed a general caveat of doing whatever makes sense and not doing what did not. She did not want to be in a state where she was dependent or unaware. These were her values.

We requested intubation after CPAP failed to ensure comfort and to allow a continuous (not as needed) infusion of sedative medication—unlikely to have been endorsed absent securing her airway—during a trial of resuscitation with fluids and vasopressors. We endorsed aggressive volume and hemodynamic support with antibiotics and comfort as a priority. Her heart stopped beating 15 hours later without further intervention. This occurred as per the directives on the MOLST form completed less than 12 hours previously.

Everyone deserves a MOLST form and MOLST champion. If an individual is not ready for MOLST or another written advanced directive, a designated proxy for health care decisions who is privy to the individual’s values and goals is crucial.

Looking to the future, as Rush and colleagues have done, we need to continue to shed light on this gap in care while we shift our field of endeavor to identify new methods and to measure the efficacy of interventions to ensure a broader base of individuals who are both informed and engaged in their individual ACP. This must address not only the absolute gap but also variability in access to PC based on region, race, and socioeconomic status, variables identified in the current article and in other publications. This is no less important than any of the other myriad health promotion interventions that have been embraced and adapted and the only life event, other than birth, that everyone will experience.

Rush B. .Hertz P. .Bond A. .McDermid R.C. .Celi L.A. . Use of palliative care in patients with end-stage COPD on home oxygen: national trends and barriers to care in the United States. Chest. 2017;151:41-46 [PubMed]journal
 
Celli BR. .MacNee W. . ATS/ERS Task Force Standards for the diagnosis and treatment of patients with COPD: a summary of the ATS/ERS position paper. Eur Respir J. 2004;23:932-946 [PubMed]journal. [CrossRef] [PubMed]
 
Selecky P.A. .Eliasson A.H. .Hall R.I. .et al Palliative and end-of-life care for patients with cardiopulmonary diseases. American College of Chest Physicians Position Statement. Chest. 2005;128:3599-3610 [PubMed]journal. [CrossRef] [PubMed]
 
Heffner J.E. . Advance care planning in chronic obstructive pulmonary disease: barriers and opportunities. Curr Opin Pulm Med. 2011;17:103-109 [PubMed]journal. [CrossRef] [PubMed]
 
Capron A.M. . The patient self-determination act: new responsibilities for health care providers. J Am Health Policy. 1992;2:40-43 [PubMed]journal
 
Compassion and Support at the End of Life. Electronic Medical Orders for Life-Sustaining Treatment in New York State.https://www.compassionandsupport.org/index.php/for_professionals/molst_training_center/emolst. Accessed August 24, 2016.
 
Murray K. How doctors die.http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus. Accessed August 24, 2016.
 
O'Neill S. Knowing how doctors die can change end-of-life discussions. NPR website.http://www.npr.org/sections/health-shots/2015/07/06/413691959/knowing-how-doctors-die-can-change-end-of-life-discussions. Accessed August 24, 2016.
 
Periyakoil V.S. .Neri E. .Fong A. .Kraemer H. . Do unto others: doctors’ personal end-of-life resuscitation preferences and their attitudes toward advance directives. PLoS ONE. 2014;9:e98246- [PubMed]journal. [CrossRef] [PubMed]
 

Figures

Tables

References

Rush B. .Hertz P. .Bond A. .McDermid R.C. .Celi L.A. . Use of palliative care in patients with end-stage COPD on home oxygen: national trends and barriers to care in the United States. Chest. 2017;151:41-46 [PubMed]journal
 
Celli BR. .MacNee W. . ATS/ERS Task Force Standards for the diagnosis and treatment of patients with COPD: a summary of the ATS/ERS position paper. Eur Respir J. 2004;23:932-946 [PubMed]journal. [CrossRef] [PubMed]
 
Selecky P.A. .Eliasson A.H. .Hall R.I. .et al Palliative and end-of-life care for patients with cardiopulmonary diseases. American College of Chest Physicians Position Statement. Chest. 2005;128:3599-3610 [PubMed]journal. [CrossRef] [PubMed]
 
Heffner J.E. . Advance care planning in chronic obstructive pulmonary disease: barriers and opportunities. Curr Opin Pulm Med. 2011;17:103-109 [PubMed]journal. [CrossRef] [PubMed]
 
Capron A.M. . The patient self-determination act: new responsibilities for health care providers. J Am Health Policy. 1992;2:40-43 [PubMed]journal
 
Compassion and Support at the End of Life. Electronic Medical Orders for Life-Sustaining Treatment in New York State.https://www.compassionandsupport.org/index.php/for_professionals/molst_training_center/emolst. Accessed August 24, 2016.
 
Murray K. How doctors die.http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus. Accessed August 24, 2016.
 
O'Neill S. Knowing how doctors die can change end-of-life discussions. NPR website.http://www.npr.org/sections/health-shots/2015/07/06/413691959/knowing-how-doctors-die-can-change-end-of-life-discussions. Accessed August 24, 2016.
 
Periyakoil V.S. .Neri E. .Fong A. .Kraemer H. . Do unto others: doctors’ personal end-of-life resuscitation preferences and their attitudes toward advance directives. PLoS ONE. 2014;9:e98246- [PubMed]journal. [CrossRef] [PubMed]
 
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