Trends in Advance Care Planning in Patients With Cancer
Original Investigation Research
Invited Commentary
Advance Directives Sometimes Necessary But Rarely Sufficient Michael J. Fisch, MD
Confronted with serious illness, patients seek the best care tailored to their needs. Some will seek care that is considered “the best,” while others may prioritize a care center that is nearby or within an affordable insurance network. Optimal cancer care involves delivery of patient- and family-centered care with values and preferences understood by the clinicians and implemented throughout the course of care. Implementing this model of care presents a challenge, requiring a flexible approach grounded in practical reality and focused on the negotiated goals. How might we fit advance directives into the model of optimal cancer care delivery? Dating back to 1990, the Patient Self Determination Act (PSDA)1 ensures that patients entering hospitals, nursing homes, or hospice care are properly informed about advance directives. However, throughout my caRelated article page 601 reer, advance directives have seemed to be a clerical process, largely out of the conEditor's Note page 610 text of clinical care and therapeutic relationships. Teno Author Audio Interview at and colleagues, including the jamaoncology.com investigators of the SUPPORT study,2 evaluated the effectiveness of the PSDA and found no improvements in communication or decision making regarding resuscitation. Today, the most common form of effective advance care planning, oral advance directives, occurs in the flow of care when patient and family preferences are elicited by clinicians and documented in the medical record. Written advance directives (living wills) come into play in a useful fashion when there is conflict between the family and health care team, disagreement within a family, or when a patient prefers to assign a nontraditional proxy for the health care decisions.3 Surrogate decision making is sometimes important too and contributes the most when the person with the durable power of attorney (DPOA) has the patient’s best interest in mind; is well informed about the patient’s values, goals, and preferences; and is sufficiently informed about the patient’s health conditions. Two years after the PSDA was enacted, the Health and Retirement Study (HRS) was initiated.4 This longitudinal, prospective study involves waves of biennial interviews of a representative sample of US citizens older than 50 years. When an HRS patient dies, a postmortem interview with a knowledgeable proxy is conducted within 2 years. In this issue of JAMA Oncology, Narang and colleagues5 examine the the subset of nearly 2000 HRS patients with cancer who died between 2000 and 2012. The investigators used the proxy interview data to examine trends over time in advance care planning, focusing on written advance directives, designation of DPOA, and disjamaoncology.com
cussion of end-of-life preferences. Similar to the CANCORS prospective study,6 Narang and colleagues found that over 80% of patients with cancer who died had undertaken some form of advance care planning. Living wills and end-of-life discussions were associated with less aggressive care, and there was no trend of change over time in these elements of advance care planning. The DPOA assignment was not associated with less aggressive care toward the end of life, and it was this form of advance care planning that increased significantly (from 52% in 2000 to 74% in 2012). In this context, there was roughly an 8-fold increase during the study period in the adjusted percentage of decedents who received “all care” at the end of life. Why is the trend heading toward more aggressive care at the end of life for patients with cancer? The first issue is that patients and families need to determine and articulate their values and preferences. This can be a difficult and emotional exercise, sometimes fraught with legalistic elements, and it is often avoided. For many, the task seems daunting and the reward nebulous. There is also a lack of effective triggers for this complex act. The easiest default is to name a specific surrogate decision maker who could act if one’s decisional capacity is lacking. The second challenge is that clinicians and the person with DPOA must ultimately know and understand the patient’s preferences and values. Living wills must be located, accessed, and clearly understood. Not all persons with DPOA are equally accessible and capable, and living wills vary widely in their clarity and utility. Finally, clinicians are expected to act in accordance with the values and preferences of the patient. Sudden events and/or those occurring in a setting with unfamiliar clinicians can lead to actions uninformed by known patient preferences. Furthermore, because cancer care is complex, clinicians and surrogate decision makers frequently struggle to apply known preferences to very dynamic treatment situations. Imagine a scenario in which a patient specifically prefers to avoid both placement in a nursing home and aggressive treatment when the cancer is deemed terminal. In this scenario, the patient is receiving Hopefulumimab and MightCureMelib in the secondline setting for an advanced solid tumor when substantial organ dysfunction occurs. An oncologist might explain to the family that it is too soon to know whether the therapy might be working to control the tumor. In the era of molecular cancer treatment, with its plethora of options and offers of hope, living wills seem stale, and surrogate decision makers are often overwhelmed by the complexity of the treatment scenario. In the end, they frequently err on the side of aggressive care. The way forward begins with better communication by proactive, prepared clinician teams. Advance directives have inherent limitations and might be regarded as sometimes nec(Reprinted) JAMA Oncology August 2015 Volume 1, Number 5
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a New York University User on 02/05/2016
609
Research Original Investigation
Trends in Advance Care Planning in Patients With Cancer
essary but rarely sufficient for achieving optimal cancer care toward the end of life for each individual patient. The primary focus of providers should be on fostering prognostic awareness, focusing on goals of care rather than specific treatments, and responding to emotions. This mirrors the practical, flexible, and individualized approach of master clinicians working as part of effective, properly resourced teams. ARTICLE INFORMATION Author Affiliation: AIM Specialty Health, Chicago, Illinois. Corresponding Author: Michael J. Fisch, MD, AIM Specialty Health, 8600 Bryn Mawr Ave, South Tower, Ste 800, Chicago, IL 60631 ([email protected]). Published Online: July 9, 2015. doi:10.1001/jamaoncol.2015.2074. Conflict of Interest Disclosures: None reported. REFERENCES 1. Patient Self Determination Act of 1990, H.R. 5067, 101st Cong. (1990). https://www.congress
Payment reform and improved integration of the principles of palliative care will likely be part of such progress. The Institute of Medicine has recently called for the development of measureable, actionable, and evidence-based standards for clinician-patient communication and advance care planning,7 and this will hopefully provide the necessary stimulus to get us beyond advance directives.
.gov/bill/101st-congress/house-bill/5067/all-info. Accessed June 8, 2015. 2. Teno J, Lynn J, Wenger N, et al; SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) Investigators. Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention. J Am Geriatr Soc. 1997;45(4):500-507. 3. Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. JAMA. 2005;294(3):359-365. 4. Sonnega A, Faul JD, Ofstedal MB, Langa KM, Phillips JW, Weir DR. Cohort profile: the Health and Retirement Study (HRS). Int J Epidemiol. 2014;43 (2):576-585.
5. Narang AK, Wright AA, Nicholas LH. Trends in advance care planning in patients with cancer: results from a national longitudinal survey [published online July 9, 2015]. JAMA Oncol. doi:10 .1001/jamaoncol.2015.1976. 6. Mack JW, Cronin A, Taback N, et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med. 2012;156(3): 204-210. 7. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.
Editor's Note
Participatory Gaps in the Advance Care Planning Process of Patients With Cancer Charles R. Thomas Jr, MD
In recent decades, there have been efforts to bring appropriate and coordinated care of terminally ill patients out of the shadows of clinical medicine. Clinicians and patients alike within the cancer community have increasingly embraced the need for advance care planning (ACP). The results reported by Narang et al1 in this issue of JAMA Oncology document a Related article page 601 disparity in the engagement of different components of Invited Commentary the ACP process. While it is page 609 encouraging to see increasing implementation of durable power of attorney by patients with cancer, this is not matched by a similar level of use of living wills or end-of-life discussions. A communication gap apparently exists between patients and clinicians if the difficult conversations regarding preferred care toward the end of life Conflict of Interest Disclosures: None reported. 1. Narang AK, Wright AA, Nicholas LH. Trends in advance care planning in patients with cancer:
610
are not taking place as they should. The findings of Narang et al,1 despite the inherent limitations in proxy-reported research methodology, suggest that an unintended scenario may be evolving in which the increasing use of power of attorney may be associated with patients relinquishing their opportunity to communicate end-of-life and living will care preferences. Hence, patients are de facto forcing surrogates who are granted power of attorney to make decisions in a communication vacuum. While creative solutions must be identified via continued research, some solutions may include routine updating of POLST (physician orders for life-sustaining treatment) for each admission, earlier engagement of palliative care teams, and further instruction of communication approaches to ACP discussion in the core postgraduate medical education curriculum.
results from a national longitudinal survey [published online July 9, 2015]. JAMA Oncol. doi:10 .1001/jamaoncol.2015.1976.
JAMA Oncology August 2015 Volume 1, Number 5 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a New York University User on 02/05/2016
jamaoncology.com
Original Investigation Research
Invited Commentary
Advance Directives Sometimes Necessary But Rarely Sufficient Michael J. Fisch, MD
Confronted with serious illness, patients seek the best care tailored to their needs. Some will seek care that is considered “the best,” while others may prioritize a care center that is nearby or within an affordable insurance network. Optimal cancer care involves delivery of patient- and family-centered care with values and preferences understood by the clinicians and implemented throughout the course of care. Implementing this model of care presents a challenge, requiring a flexible approach grounded in practical reality and focused on the negotiated goals. How might we fit advance directives into the model of optimal cancer care delivery? Dating back to 1990, the Patient Self Determination Act (PSDA)1 ensures that patients entering hospitals, nursing homes, or hospice care are properly informed about advance directives. However, throughout my caRelated article page 601 reer, advance directives have seemed to be a clerical process, largely out of the conEditor's Note page 610 text of clinical care and therapeutic relationships. Teno Author Audio Interview at and colleagues, including the jamaoncology.com investigators of the SUPPORT study,2 evaluated the effectiveness of the PSDA and found no improvements in communication or decision making regarding resuscitation. Today, the most common form of effective advance care planning, oral advance directives, occurs in the flow of care when patient and family preferences are elicited by clinicians and documented in the medical record. Written advance directives (living wills) come into play in a useful fashion when there is conflict between the family and health care team, disagreement within a family, or when a patient prefers to assign a nontraditional proxy for the health care decisions.3 Surrogate decision making is sometimes important too and contributes the most when the person with the durable power of attorney (DPOA) has the patient’s best interest in mind; is well informed about the patient’s values, goals, and preferences; and is sufficiently informed about the patient’s health conditions. Two years after the PSDA was enacted, the Health and Retirement Study (HRS) was initiated.4 This longitudinal, prospective study involves waves of biennial interviews of a representative sample of US citizens older than 50 years. When an HRS patient dies, a postmortem interview with a knowledgeable proxy is conducted within 2 years. In this issue of JAMA Oncology, Narang and colleagues5 examine the the subset of nearly 2000 HRS patients with cancer who died between 2000 and 2012. The investigators used the proxy interview data to examine trends over time in advance care planning, focusing on written advance directives, designation of DPOA, and disjamaoncology.com
cussion of end-of-life preferences. Similar to the CANCORS prospective study,6 Narang and colleagues found that over 80% of patients with cancer who died had undertaken some form of advance care planning. Living wills and end-of-life discussions were associated with less aggressive care, and there was no trend of change over time in these elements of advance care planning. The DPOA assignment was not associated with less aggressive care toward the end of life, and it was this form of advance care planning that increased significantly (from 52% in 2000 to 74% in 2012). In this context, there was roughly an 8-fold increase during the study period in the adjusted percentage of decedents who received “all care” at the end of life. Why is the trend heading toward more aggressive care at the end of life for patients with cancer? The first issue is that patients and families need to determine and articulate their values and preferences. This can be a difficult and emotional exercise, sometimes fraught with legalistic elements, and it is often avoided. For many, the task seems daunting and the reward nebulous. There is also a lack of effective triggers for this complex act. The easiest default is to name a specific surrogate decision maker who could act if one’s decisional capacity is lacking. The second challenge is that clinicians and the person with DPOA must ultimately know and understand the patient’s preferences and values. Living wills must be located, accessed, and clearly understood. Not all persons with DPOA are equally accessible and capable, and living wills vary widely in their clarity and utility. Finally, clinicians are expected to act in accordance with the values and preferences of the patient. Sudden events and/or those occurring in a setting with unfamiliar clinicians can lead to actions uninformed by known patient preferences. Furthermore, because cancer care is complex, clinicians and surrogate decision makers frequently struggle to apply known preferences to very dynamic treatment situations. Imagine a scenario in which a patient specifically prefers to avoid both placement in a nursing home and aggressive treatment when the cancer is deemed terminal. In this scenario, the patient is receiving Hopefulumimab and MightCureMelib in the secondline setting for an advanced solid tumor when substantial organ dysfunction occurs. An oncologist might explain to the family that it is too soon to know whether the therapy might be working to control the tumor. In the era of molecular cancer treatment, with its plethora of options and offers of hope, living wills seem stale, and surrogate decision makers are often overwhelmed by the complexity of the treatment scenario. In the end, they frequently err on the side of aggressive care. The way forward begins with better communication by proactive, prepared clinician teams. Advance directives have inherent limitations and might be regarded as sometimes nec(Reprinted) JAMA Oncology August 2015 Volume 1, Number 5
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a New York University User on 02/05/2016
609
Research Original Investigation
Trends in Advance Care Planning in Patients With Cancer
essary but rarely sufficient for achieving optimal cancer care toward the end of life for each individual patient. The primary focus of providers should be on fostering prognostic awareness, focusing on goals of care rather than specific treatments, and responding to emotions. This mirrors the practical, flexible, and individualized approach of master clinicians working as part of effective, properly resourced teams. ARTICLE INFORMATION Author Affiliation: AIM Specialty Health, Chicago, Illinois. Corresponding Author: Michael J. Fisch, MD, AIM Specialty Health, 8600 Bryn Mawr Ave, South Tower, Ste 800, Chicago, IL 60631 ([email protected]). Published Online: July 9, 2015. doi:10.1001/jamaoncol.2015.2074. Conflict of Interest Disclosures: None reported. REFERENCES 1. Patient Self Determination Act of 1990, H.R. 5067, 101st Cong. (1990). https://www.congress
Payment reform and improved integration of the principles of palliative care will likely be part of such progress. The Institute of Medicine has recently called for the development of measureable, actionable, and evidence-based standards for clinician-patient communication and advance care planning,7 and this will hopefully provide the necessary stimulus to get us beyond advance directives.
.gov/bill/101st-congress/house-bill/5067/all-info. Accessed June 8, 2015. 2. Teno J, Lynn J, Wenger N, et al; SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) Investigators. Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention. J Am Geriatr Soc. 1997;45(4):500-507. 3. Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. JAMA. 2005;294(3):359-365. 4. Sonnega A, Faul JD, Ofstedal MB, Langa KM, Phillips JW, Weir DR. Cohort profile: the Health and Retirement Study (HRS). Int J Epidemiol. 2014;43 (2):576-585.
5. Narang AK, Wright AA, Nicholas LH. Trends in advance care planning in patients with cancer: results from a national longitudinal survey [published online July 9, 2015]. JAMA Oncol. doi:10 .1001/jamaoncol.2015.1976. 6. Mack JW, Cronin A, Taback N, et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med. 2012;156(3): 204-210. 7. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.
Editor's Note
Participatory Gaps in the Advance Care Planning Process of Patients With Cancer Charles R. Thomas Jr, MD
In recent decades, there have been efforts to bring appropriate and coordinated care of terminally ill patients out of the shadows of clinical medicine. Clinicians and patients alike within the cancer community have increasingly embraced the need for advance care planning (ACP). The results reported by Narang et al1 in this issue of JAMA Oncology document a Related article page 601 disparity in the engagement of different components of Invited Commentary the ACP process. While it is page 609 encouraging to see increasing implementation of durable power of attorney by patients with cancer, this is not matched by a similar level of use of living wills or end-of-life discussions. A communication gap apparently exists between patients and clinicians if the difficult conversations regarding preferred care toward the end of life Conflict of Interest Disclosures: None reported. 1. Narang AK, Wright AA, Nicholas LH. Trends in advance care planning in patients with cancer:
610
are not taking place as they should. The findings of Narang et al,1 despite the inherent limitations in proxy-reported research methodology, suggest that an unintended scenario may be evolving in which the increasing use of power of attorney may be associated with patients relinquishing their opportunity to communicate end-of-life and living will care preferences. Hence, patients are de facto forcing surrogates who are granted power of attorney to make decisions in a communication vacuum. While creative solutions must be identified via continued research, some solutions may include routine updating of POLST (physician orders for life-sustaining treatment) for each admission, earlier engagement of palliative care teams, and further instruction of communication approaches to ACP discussion in the core postgraduate medical education curriculum.
results from a national longitudinal survey [published online July 9, 2015]. JAMA Oncol. doi:10 .1001/jamaoncol.2015.1976.
JAMA Oncology August 2015 Volume 1, Number 5 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a New York University User on 02/05/2016
jamaoncology.com
