Abstract
Abstract
Introduction:
Ventricular-assist devices (VADs) offer end-stage heart failure patients a chance to live longer and better. VAD patient numbers are growing, as is the need for their hospice care, whether they die from cardiac or noncardiac causes. But many hospices do not accept VAD patients because of unfamiliarity with the technology. In 2017, there were no hospice agencies in our area accepting VAD patients.
Case Description:
Mr. S was a 61-year-old man with a VAD implanted in 2011. In 2016, he was diagnosed with metastatic colorectal adenocarcinoma, underwent surgical resection, and suffered many postoperative complications. In January 2017, he was hospitalized for a driveline infection and bacteremia. During that stay, Mr. S opted for comfort care with the goal of returning home. The only chance of Mr. S's going home rested on our hospice agency's accepting him. In less than two weeks, our hospice staff partnered with the patient's VAD team to develop the competencies to care for Mr. S. He was stabilized at our inpatient unit and then spent several weeks at home before symptoms required return to inpatient care. When Mr. S became unresponsive, his family chose to inactivate the VAD; Mr. S's death followed quickly and peacefully. Our agency now routinely provides hospice care for VAD patients.
Discussion:
It is increasingly important that hospice agencies accept VAD patients seeking hospice care. By drawing on educational resources available from VAD patients' acute-care hospital-based VAD teams, interdisciplinary education of hospice staff can be accomplished quickly and effectively.
Introduction
An estimated 5.7 million American adults suffer from congestive heart failure; by 2030, this number is expected to grow to 8 million. 1 Annual deaths attributed to end-stage heart failure exceeds 300,000. 2 Heart transplantation is an option for some end-stage patients, but the total number of heart transplants annually has remained about 3000 because of limited availability of donor organs, 3 and many end-stage patients are not candidates for transplantation due to other organ-related comorbidities or a cancer diagnosis during the previous five years. 4
Mechanical circulatory support with ventricular-assist devices (VADs) offers many end-stage heart failure patients an opportunity to live longer, often with significantly improved quality of life. 5 As medicine and technology advance, and as the population ages, the number of patients receiving VADs has been steadily increasing, including among patients >75 years of age. 6
The rise in the number of patients living with VADs requires a health care workforce that is trained to care for these patients. In addition to general health care needs, VAD patients may require specialty care for the host of health problems and diagnoses experienced by the general population. In particular, more VAD patients are requiring palliative and end-of-life care either as a result of poor VAD outcomes or because of other life-limiting noncardiac diseases, including cancer. 7
Despite the growing need, many hospices do not accept VAD patients due to lack of familiarity with the advanced technology and lack of available data to provide guidance on best practices. 8 Furthermore, because hospice nurses are not credentialed in VAD care, they do not automatically possess the competencies to provide hospice support to VAD patients.
As of early 2017, there were no hospice agencies in the Philadelphia metropolitan area providing care for VAD patients. In January 2017, our hospice agency was asked to care for a VAD recipient in need of hospice care for metastatic colorectal cancer. To care properly for this patient, our hospice agency needed to develop the relevant competencies quickly. Despite the complexity of VAD technology, our agency was able in less than two weeks to educate our interdisciplinary hospice staff to provide care for this patient.
Case Description
Patient background
Mr. S was a 61-year-old man with a VAD that was originally implanted in 2011. In 2016, Mr. S was diagnosed with colorectal adenocarcinoma with liver metastases. After his diagnosis, Mr. S underwent surgical resection. His postoperative course was complicated by a VAD-related driveline infection and bacteremia, for which he required acute-care rehospitalization in January 2017. Although Mr. S's blood cultures did eventually clear, his platelet counts dropped markedly. He was deemed too frail and debilitated for systemic antitumor therapy, and his prognosis was estimated to be less than three months. As a result, Mr. S opted for comfort care with the goal of returning home.
Program of education
In order for our hospice staff to care for Mr. S, competency was needed in four general areas of VAD patient care: (1) use and troubleshooting of the VAD equipment, (2) implications for clinical assessment of VAD patients, (3) emotional and ethical issues associated with VAD patient care, and (4) termination and withdrawal of VAD support.
To gain the relevant proficiencies, our inpatient and home hospice staff (nurses, nursing assistants, physicians, nurse practitioners, social workers, and chaplains) partnered with members of the Hospital of the University of Pennsylvania (HUP) VAD team in the following program of education:
A four-hour long didactic session co-led by the HUP heart failure liaison and Abbott's heart failure clinical consultant using a training slide deck developed by Abbott (the maker of Mr. S's HeartMate II VAD). A two-hour-long hands-on session and practical exercises with all aspects of VAD equipment, created and led by the HUP heart failure liaison. An hour-long didactic session on clinical and ethical considerations in VAD patient care led by the HUP Codirector of Palliative Care Services using slides developed by this speaker.
The initial didactic session provided instruction on how VADs provide circulatory support. Specifically, staff learned that blood from a patient's native left ventricle travels into the inflow cannula of the VAD pump and then exits the pump through an outflow cannula that is connected to the aorta, allowing the VAD to assume most of the work of delivering oxygenated blood to the body. A driveline exits the patient's abdomen and connects to the VAD controller and its energy source (either continuous wall power or portable battery packs), providing power to the internal pump. The controller is the “brain” for the pump; it displays pump speed (rotations per minute/RPM), blood flow (L/minute); pulse index (PI); power being used by the pump as it works (Watts); and backup battery status.
Along with training on VAD equipment, medical and nursing staff learned how clinical assessment must be modified for VAD patients. VAD parameters are individualized, with each patient having a different “norm” with regard to pump settings, but some implications for patient assessment apply to all VAD patients. Because the pump provides continuous flow, (1) it is difficult to detect pulsatility in patient extremities without the aid of Doppler ultrasound, (2) there is a markedly diminished heartbeat that is overshadowed by a constant hum, and (3) pulse pressures are narrow. As a result, pulses may not be palpable and blood pressure is not measurable by usual means; Doppler is needed to auscultate pulse flow and measure blood pressure (which is similar to mean arterial pressure). Furthermore, pulse oximetry may not read correctly due to a damped pleth. If death precedes discontinuation of the VAD, it is confirmed by lack of respirations and absent reflexes, and then the VAD is turned off. These differences in the clinical assessment of VAD patients can create additional discomfort for staff, beyond the challenges created by unfamiliarity with VAD equipment and its proper function. 9 It is important to provide enough education and training for staff to feel at ease with both VAD equipment and VAD patient assessment.
VADs are equipped with a variety of alarms to indicate when an aspect of pump functioning has deviated from optimal. Some of these alarms convey an interruption in power to the pump that requires urgent restoration. Other pump alarms relate primarily to low blood flow into the patient's left ventricle and, thus, into the pump mechanism itself. Troubleshooting this type of alarm always begins with an assessment of the patient, because low flow in VAD patients occurs for many of the same reasons as in non-VAD patients, namely hypovolemia/bleeding, vasodilation, sepsis/systemic inflammatory response syndrome, tamponade, right ventricular failure, and high peripheral vascular resistance, among other problems. An important reminder during training was that VAD teams are available 24/7 and, thus, are always available as an ongoing source of support and reassurance to patients and families and to the professional providers who care for them.
Staff were also provided with additional continuing education on other clinical and ethical challenges in VAD care. Like intubation for respiratory failure, or dialysis for kidney failure, VADs can extend life even after a failing organ would end it. However, quality of life can decline to the point that a patient may choose to have his/her VAD turned off. When a patient chooses VAD discontinuation, clinicians are prepared to administer a variety of medications (e.g., opioids, benzodiazepines) to manage symptoms, similar to end-of-life weaning from inotropes and pressors or compassionate ventilator weaning. 10 In such cases, optimal care includes family support and respect for religious/spiritual views and practices. Death can follow quickly or take time, depending on a patient's residual myocardial function. Having resources for support available from social work, spiritual support and bereavement staff, and interpreters may augment the dying process for the family and patient.
Increasingly commonly, VAD patients are developing other life-limiting diseases 11 —as in Mr. S's case. These patients, too, may choose to have their VAD turned off before death. Individual clinicians are, as always, free to decline to turn off a VAD in a living patient for ethical reasons although they are obliged to support the patient by trying to find a clinician who is willing to provide care that is consistent with patient wishes.
Once the training was complete, staff were provided with competency-based certificates. Laminated instruction sheets with the key components of VAD care and troubleshooting were displayed at the nurses' station of our inpatient hospice unit and provided to home hospice nursing staff. Online recordings of the didactic sessions were made readily accessible to all staff for ongoing reinforcement of learned skills.
Patient's hospice care
After all staff completed the educational program, we were able to accept Mr. S into our hospice services, stabilize his symptoms at our inpatient unit, and discharge him to home hospice care. Mr. S was stable at home for nearly three weeks on oral medications. He then developed uncontrolled nausea, vomiting, and pain with the inability to tolerate oral intake that required his return to our inpatient hospice unit. For the next week, Mr. S declined to the point of minimal responsiveness and agonal breathing, at which time Mr. S's family decided to turn off the VAD. Mr. S's death followed quickly and peacefully. After deactivation of the VAD, follow-up support for staff involved in his care was made available.
Discussion
As VAD patient numbers grow, it is important that more hospice agencies develop the competencies to care for these patients. These patients, like anyone else, may opt for hospice care whether their death is expected as a result of cardiac or noncardiac causes. Yet Dunlay et al. 12 have found that VAD patients are much less likely than other heart failure patients to enroll in hospice and much more likely to die in an acute-care hospital, typically in an intensive care unit. Among the possible reasons for differential rates of hospice enrollment, these authors note the challenge of finding hospice agencies willing to accept patients with VADs due to lack of comfort with, and training in, managing the device.
Hospital deaths have repeatedly been found to be associated with lower patient quality of life, higher emotional distress for patients and caregivers, and less satisfaction and more psychiatric disturbances among bereaved caregivers than hospice deaths are. 13 Although empirical data documenting the same findings specifically among VAD patients is lacking, it is reasonable to assume that a similar pattern is likely.
Every VAD patient is followed prospectively by a team of providers from the acute-care hospital at which their VAD was implanted, and that team includes 24/7 support from both clinical staff and the manufacturer of the implanted device. These teams have the educational resources at hand to share with hospice agencies that are planning to assume care of a VAD patient. We were able to partner with our first VAD patient's team to train our hospice staff in the technical, clinical, emotional, and ethical aspects of care for these patients. Our experience shows that it is possible—quickly and effectively—to educate interdisciplinary hospice staff to provide end-of-life care to VAD patients.
Footnotes
Author Disclosure Statement
No competing financial interests exist.