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OMEGA, Vol.

67(1-2) 161-166, 2013

IMPROVING END-OF-LIFE CARE FOR


VENTRICULAR ASSIST DEVICES (VAD) PATIENTS:
PARADOX OR PROTOCOL?*

PEG MCGONIGAL, MAPS, MA, BCC


Aurora Health Care, Milwaukee, Wisconsin

ABSTRACT

When a person consents to have a ventricular assist device (VAD) implanted


in ones heart, the intention is to extend life toward a new heart or toward
more time. Complications may develop followed by frequent hospital
admissionsmost often in an intensive care unit (ICU) settingrendering
a transplant a distant reality and to discontinue the device means certain
death. Emotional support for patient and family is critical. Regardless of
the original goal for the device, palliative care provides assistance in com-
munication, goal setting, and symptom management and yet its consultation
is often more for brink-of-death care than end-of-life care provided at the
time of diagnosis of a life-threatening disease such as heart failure. This
study examined the recent deaths of hospitalized patients with VADs
and the use of the palliative care service. Understanding the benefit and
timing of palliative care for VAD patientsparticularly in the ICU setting
may improve the end-of-life experience for patients, families, and health-
care providers.

*Editors Note: The content from this article is a result of the authors attendance and
participation in the ACE Project: Advocating for Clinical Excellence: A Transdisciplinary
Palliative Care Education program supported by a grant from the National Cancer Institute of the
National Institutes of Health under award number R25CA110454 (Shirley Otis-Green, Principal
Investigator). We appreciate the OMEGA: Journal of Death and Dying for publishing this article
as part of a dedicated special issue celebrating the achievements of the ACE Project participants.

161

2013, Baywood Publishing Co., Inc.


doi: http://dx.doi.org/10.2190/OM.67.1-2.s
http://baywood.com
162 / MCGONIGAL

INTRODUCTION
Helens Story
Helen, whose name has been changed, consented to having a ventricular assist
device (VAD) implanted in her heart because, as she stated, The good Lord
has provided me with an opportunity to stick around for a bit. Her doctors offered
her a VAD because they thought it would help manage her symptoms and extend
her life. The night before surgery, she confided in the chaplain Id be okay
if something happened and I didnt make it off the table. I believe I am going
to a better place. She also shared she was very worried about her family as they
needed her constant attention and support to cope.
Things went well for Helen initially, and her family was relieved. But then
she suffered serious complications and never regained consciousness. Her
family was devastated and struggled to function properly. Her daughter said,
We are lost without her. As the days wore on, communication between family
members had deteriorated. With the support of the nurse and the chaplain, the
family concluded Helen was near the end of her life following a family con-
ference with the physician. The day before her death, they found it too difficult
to stay at her bedside. Their grief was complicated by difficult family dynamics.
Helen suffered more complications and died the following day. Her family
was overcome by their grief and required intensive support from staff.
Both the patient and family may have benefited from a timely referral to
palliative care. While Helen was accepting of her advancing heart failure, she
chose to try an intervention to extend her life. The palliative care team may
have helped her communicate with her family and doctors her treatment prefer-
ences for care at the end of her lifespecifically the withdrawal of the VAD. Her
family may have benefited from open communication and emotional support
addressing their anticipatory grief. Instead, there was little transition from inter-
vention to death and the family displayed an intense grief response at the time
of Helens death.
Helens story epitomizes what can happen when end-of-life carespecifically
under the consultation of a palliative care teamis not provided for a VAD
patient. Her story was the impetus for an evidence-informed program evaluation
to examine the use of palliative care for VAD patients and to investigate whether
its use should be considered standard protocol. The purpose of this article is
to describe the process and preliminary outcomes of a quality improvement
initiative to monitor the utilization of palliative care for VAD patients.

BACKGROUND
A VAD is implanted in patients with advanced heart failure most often for
one of two reasons: as a bridge-to-transplant (BTT) or as a permanent form
of end-of-life therapy (Destination Therapy or DT) for those not eligible for
VENTRICULAR ASSIST DEVICES PATIENTS / 163

transplantation. A VAD is a mechanical circulatory device implanted into a


patients diseased heart. Because DT is a final stage of therapy for chronic heart
failure, the literature supports the use of early palliative care consultation to
identify treatment preferences and surrogate decision-makers at the end of life
for these patients (Dudzinski, 2006). Therefore, the use of palliative care in the
case of DT can be seen as a matter of protocol.
However, early use of palliative care consultations for BTT patients may seem
paradoxical since the goal of care is to survive until transplantation. The literature
about this population is limited and yet what little scholarship has been con-
ducted is significant, finding that early palliative care consultationlong before
transplantation is no longer an option or a patient chooses to deactivate the
devicecan enhance the patients quality of life for patients diagnosed with
advanced heart failure (Bramstedt, 2008; Stuart, 2007). Experts recommend
that palliative care be consulted at the time of diagnosis of a life-threatening
disease to assist with planning for an uncertain future (Ferrell, 2005). Also
documented in a study of lung cancer patients, early involvement of palliative
care services may lead to improvements in quality of life, less aggressive care
at the end of life, and longer time of survival (Temel, Greer, Muzikansky,
Gallager, Admane, Johnson, et al., 2010).
The inclusion of palliative care in the consent process prior to device implan-
tation can be beneficial for patients, families, and healthcare providers (Rizzieri,
Verheijde, Rady, & McGregor, 2008). These benefits include the use of a multi-
disciplinary team, a treatment plan for anticipated device-related complication,
emotional support for the patients caregiver, advance-care planning that includes
direction related to end-of-life care and deactivation of the device, and a discus-
sion concerning the potential long-term financial burdens on the patient, family,
or caregiver. Research also suggests that advance care planning conversations
that directly address potential device withdrawal can facilitate a smoother
transition of care at the end-of-life (MacIver & Ross, 2005). Finally, Mueller
and associates propose that supporting patients and surrogate decision-makers
during the decision to withdraw a device that is no longer medically indicated
is an ethical obligation (Mueller, Swetz, Freema, Carter, Crowley, Anderson
Severson, et al., 2010).

OBJECTIVES
This study examines the timing and use of palliative care for patients on a
VAD who were at the end-of-life while admitted to a cardio-vascular intensive
care unit. The objectives were to: explore the need for palliative care for VAD
patients and their families who choose to deactivate the device that is no longer
clinically indicated, identify the successes and challenges of providing palliative
care to this population, document the frequency of palliative care utilization in
this setting, and identify and implement best-practices and monitor outcomes
for a 1-year period.
164 / MCGONIGAL

METHODS
The first objective of this study was to demonstrate the need for palliative care
for VAD patients and their families who chose to deactivate the device. While the
palliative care service reported low consultation for this population, it had not
systematically studied how its inclusion may improve end-of-life care for VAD
patients and their families. There was anecdotal evidence of the successes and
challenges in providing palliative care for VAD patients, but there were no
concrete data to support that evidence. This information was gathered through
informal patient/family interviews and interactions with healthcare staff.
Since this project involved chart audits of deceased patients, the institutional
review board directed that permission be obtained from the corporate com-
pliance officer, which was granted. To explore the utilization of palliative care, a
chart-audit tool was developed in collaboration with the palliative care service.
Audit elements included length of stay, number of physician consults, family
conferences and goal setting, number of palliative care days, family present at
time of death, multidisciplinary support for patient and families, and the use
of comfort care orders.
Charts were reviewed for a 1-year period of all in-patient VAD deaths. Data
were analyzed and used to inform and improve existing quality of care processes.
Literature and other national transplant centers were consulted to identify best
practices. Findings were presented to the palliative care team, the Mechanical
Circulatory System Device (MCSD) Quality Review Committee, and other iden-
tified quality improvement champions within the organization. Outcome evalua-
tion strategies were discussed to measure the effectiveness of practice enhance-
ments for in-patient VAD deaths the following year. Subsequent years data
are currently being collected and analyzed.

RESULTS
The medical charts of all 11 in-patient VAD deaths that had occurred within
a 12-month period were reviewed. Among these, palliative care was utilized
for only four patients. Although all patients exhibited signs and symptoms of
end-stage heart disease, relatively few received palliative care services. The
request for palliative care consultation was recorded for only these four
patients. It was, therefore, concluded that palliative care was not likely offered
in the remaining patients. Two of the patients had a VAD for BTT and two
had a VAD for DT.
Two patients had palliative care involved for 4 days while a third had palliative
services for 2 days. The one remaining patient had palliative care involvement
for nearly a month (n = 28 days). The average overall length of in-patient stay
was 53.6 days, with one outlying case of 476 days. Despite the unusually long
length of stay, palliative services were involved for only 2 days. This was
found to be particularly troublesome in light of what the literature recommends:
VENTRICULAR ASSIST DEVICES PATIENTS / 165

the earlier involvement of palliative care, which may have led to a treatment
plan for anticipated device-related complications including direction related to
end-of-life care and deactivation of the device.
As is often typical with intensive care cases, the average number of consulting
physicians in each case was 9.3. In eight out of eleven cases, do not resuscitate
orders (DNR) orders were written on the day the patient died. Standard comfort
care orders were used in 50% of the cases. While in most cases at least one
family conference occurred; documentation of the content was often lacking.
Additional support resources were consulted in 82% of cases. These included
chaplain (82%), social work (72%), psychologist (45%), and child life specialist
(18%). (Note: data were not collected regarding the date of referral or number
of days these disciplines were involved in care.) Interestingly enough, 90%
of the patients had completed power of attorney for healthcare documents as
has been recommended (MacIver & Ross, 2005; Rizzeri et al., 2008; Weigand
& Kalowes, 2007) and yet interventions often occurred until the VAD was
deactivated and/or the patient had died. The implication is the power of attorney
document may have not been consulted or the agent may have consented to
interventions in contrast to the patients wishes.

DISCUSSION
In our sample, palliative care was present in a minority of cases; more consistent
involvement of palliative care may serve to improve end-of-life care for VAD
patients and their familiesparticularly in an ICU setting. Once consulted, it
took an average of 3.3 days for palliative care to hold a family conference to
discuss the patients wishes and establish new goals of care. These results, coupled
with additional anecdotal evidence, suggest that palliative care provided the
most consistent documentation of goal setting, information sharing, assistance in
decision-making, and transdisciplinary care in comparison to the care provided
without palliative services.
The collected data were analyzed to identify patterns in the care provided and
identify areas for improvement in quality end-of-life care such as consulting
palliative care at the time of admission, detailed and consistent documentation of
family conferences, and use of standing comfort care orders. Multidisciplinary
VAD rounds occur weekly and now include representatives from the palliative
care service. In addition, representatives from palliative care now meet with all
patients considering a VAD for destination therapy. Subsequent discussions have
included the earlier use of palliative consultation for all patients with heart failure.

IMPLICATIONS FOR PRACTICE


The findings from this study suggest palliative care may be of benefit for VAD
patients and their families who are faced with deactivating the deviceregardless
of the original goal of device implementation. Palliative care providers offer
166 / MCGONIGAL

expertise in identifying goals, opening communication, and supporting the patient


and family from diagnosis, through the life-altering disease, until death. Patients
like Helen have taught us it is not only important to understand the why behind a
VAD patients death but to also comprehend and appreciate how a VAD patient
dies. Efforts have been made to establish a more systematized protocol whereby
the palliative care service is consulted for patients who are candidates for a VAD
as an intervention for destination therapy. In addition, there is institutional support
to further explore the use of palliative care for all patients who are candidates for
a VADregardless of the goal for the deviceand to explore the chaplains
role in providing primary palliative care in the intensive care unit setting.

REFERENCES
Bramstedt, K. A. (2008). Hoping for a miracle: Supporting patients in transplantation
and cardiac assist programs. Current Opinion in Supportive and Palliative Care, 2,
252-255.
Dudzinski, D. M. (2006). Ethics guidelines for destination therapy. The Annals of Thoracic
Surgery, 81, 1185-1188.
Ferrel, B. R. (2005). Overview of the domains of variables relevant to end-of-life care.
Journal of Palliative Medicine, 8, 22-28.
MacIver, J., & Ross, H. J. (2005). Withdrawal of ventricular assist device support.
Journal of Palliative Care, 21, 151-156.
Mueller, P. S., Swetz, K. M., Freema, M. R., Carter, K. A., Crowley, M. E., Anderson
Severson, C. J., et al. (2010). Ethical analysis of withdrawing ventricular assist
device support. Mayo Clinic Proceedings, 85, 791-797. doi: 10.4065/mcp.2010.0113
Rizzeri, A. G., Verheijde, J. L., Rady, M. Y., & McGregor, J. L. (2008). Ethical chal-
lenges with the left ventricular assist device and destination therapy. Philosophy,
Ethics, and Humanities in Medicine, 3. doi: 10.1186/1747-5341-3-20
Stuart, B. (2007). Palliative care and hospice in advanced heart failure. Journal of
Palliative Medicine, 10, 210-227.
Temel, J. S., Greer, J. A., Muzikansky, A., Gallager, E. R., Admane, S., Jackson, V. A.,
et al. (2010). Early palliative care for patients with metastatic non-small-cell lung
cancer. The New England Journal of Medicine, 363, 733-742.
Weigand, D. L., & Kalowes, P. G. (2007). Withdrawal of cardiac medications and devices.
AACN Advanced Critical Care, 18, 415-425.

Direct reprint requests to:

Margaret McGonigal
Aurora St. Lukes Medical Center
3331 S. Delaware Ave.
Milwaukee, WI 53207
e-mail: peg.mcgonigal@aurora.org
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