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Self-care and communication issues at the end of life of recipients of a left-ventricular assist device as destination therapy

Ben Gal, Tuviaa; Jaarsma, Tinyb

Current Opinion in Supportive and Palliative Care: March 2013 - Volume 7 - Issue 1 - p 29–35
doi: 10.1097/SPC.0b013e32835d2d50
CARDIAC AND CIRCULATORY PROBLEMS: Edited by James Beattie
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Purpose of review The purpose of this review is to provide an overview of self- care and communication issues at the end of life of patients with left-ventricular assist devices (LVADs) for destination therapy, based on recent research on end-of-life communication in other diseases.

Recent findings For many patients with advanced heart failure, LVADs as destination therapy improve survival and quality of life. However, LVADs can be associated with complications, new comorbidities or worsening of previous conditions, resulting in decreased quality of life and limited prognosis, raising the need for planning palliative and end-of-life care. Open communication addressing the consequences of the LVAD implantation for daily life and the future (including advance directives) is advised in different stages of the treatment, involving a multidisciplinary team taking care of these complex patients and their caregivers.

Summary Healthcare professionals treating patients before and after LVAD implantation need to take an active role in end-of-life discussions and be able to communicate information regarding expected complications, quality of life and prognosis to the patients and caregivers. Research is needed addressing optimal ways and timing of communication with LVAD patients and families

aHeart Failure Unit, Cardiology Department, Rabin Medical Center, Petah Tikva, affiliated to the Sacker Faculty of Medicine, Tel Aviv University, Israel

bDepartment of Social and Welfare Studies, Faculty of Health Sciences Linköping University, Norrköping, Sweden

Correspondence to Tuvia Ben Gal, MD, Director, Heart failure Unit, Cardiology Department, Rabin Medical Center, 39 Jabotinski St., Petah Tikva 49100, Israel. E-mail: bengalt@clalit.org.il

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INTRODUCTION

The number of patients with heart failure is increasing worldwide with approximately 1–2% of the adult population in developed countries suffering from this chronic disease [1▪▪]. Treatment of heart failure can include intense pharmacological therapy, lifestyle changes and device therapy [1▪▪]. For the severely symptomatic and end-stage heart failure patient, heart transplantation (HTx) is the best therapy to improve long-term survival. Because of organ donation shortage, mechanical circulatory support with a left ventricular assist device (LVAD) is used as a bridge to HTx. Initially the LVADs were only used this way but with the increased reliability and durability of the continuous flow LVADs, relatively long-term (2 years) survival is much better with an LVAD than with optimal medical therapy [2]. Therefore, LVADs are considered a good alternative to HTx, mostly for those patients who are ineligible for HTx due to old age or the presence of specific co-morbidities such as diabetes with end organ involvement or pulmonary hypertension. These patients are intended to be permanently supported by the LVAD: Destination Therapy [3].

Despite the improved quality of life and survival seen in most Destination Therapy patients [4], stroke (hemorrhagic or thrombotic), gastrointestinal bleeding, driveline infection, and (rarely) device malfunction are, however, serious problems affecting quality of life and worsening the prognosis of the patients supported with the LVAD [5].

Box 1

Box 1

Although the number of studies describing the needs of LVAD supported patients is limited and trials addressing effectiveness of interventions to optimize quality of care are still scarce, a number of recent reviews describe technical, practical, psychosocial, emotional and ethical issues in the management of patients supported with an LVAD [6▪▪,7,8▪,9]. This paper aims to summarize self-care and communication issues that need to be considered at the end of life of patients supported with an LVAD.

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LVAD AS DESTINATION THERAPY: STATE OF THE LVAD SCENE

The use of any LVAD as Destination Therapy means that the device is expected to provide lifelong or permanent support to patients with end-stage heart failure who are not candidates for HTx. Recently (2012), two devices have been widely used as Destination Therapy: the Heart Mate II (HMII) and the HeartWare (HVAD) LVADs.

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Heart Mate II

The HMII is a new generation of continuous flow LVADs, approved by the US Food and Drug Administration (FDA) for Destination Therapy in 2010. A driveline (cable) exits the patient's abdominal skin connecting the implanted device with an external controller and batteries or a standard household electrical power outlet. Data from the study upon which the FDA approval was based [10], showed that the HMII achieved statistically better results compared to patients who were implanted with the previous version HeartMate XVE, reporting improved 2-year survival and quality of life after 2 years of support. The most common adverse events reported (recorded as events per patient year) were: bleeding 1.44, driveline infections in 0.32, pocket infection 0.03, embolic stroke 0.06, and cardiac arrhythmias 0.49. [11]

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HeartWare

HVAD is a smaller magnetically levitated centrifugal pump [12], with a CE Mark in the indication of bridge to transplantation in 2009. In 2012 the device received an expanded European label for long-term use in all patients at risk of death from refractory, end-stage heart failure, which is similar to the ’Destination Therapy’ indication in the USA. The HVAD was at least noninferior to the commercially available VADs with regard to survival and quality of life. Although thinner than the driveline of the HMII, driveline exit sites infections were observed in 12% of the patients. The most reported adverse events for the HVAD were bleeding 0.61, driveline infections in 0.29, embolic stroke 0.11, hemorrhagic stroke 0.09 and ventricular arrhythmias 0.39.

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Syncardia

This total artificial heart (TAH) was approved by the FDA for the indication of bridge to HTx in 2004. The longest survival with the device was almost 4 years before the patient underwent HTx. This device is the only TAH replacing both ventricles that has been accepted by the FDA to be used on a humanitarian basis with the designation for Destination Therapy. The device was implanted in more than a thousand patients, most of whom were in critical life threatening situations (INTERMACS 1), mainly as a bridge to HTx [13].

Although the Syncardia TAH was also recently accepted by the FDA to be used on a humanitarian basis with the designation for Destination Therapy, both patients and device differ so much from the LVAD group that discussing issues concerning TAH patients is beyond the scope of the present review.

The success rates of the new generations of LVADs are high compared to the outcomes of the older generation pulsatile devices, but there are still some challenges in using these devices. The need for an extracorporeal energy supply is one of the main drawbacks in the new generation of LVADs. Furthermore, the infections in the driveline exit site, the patient's inability to lie on the side of the driveline exit site, swim or take a bath impair the quality of life in LVAD supported patients. The need for anticoagulant therapy to prevent thrombotic events and the risk of bleeding, mainly from the gastrointestinal tract, can also influence quality of life in LVAD supported patients.

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MAJOR ISSUES AT THE END OF LIFE IN LVAD PATIENTS

Although there are no large studies in the area of palliative care or end-of-life care of LVAD patients, several reviews or reflective papers describing issues that are associated with caring for patients with LVADs have recently been published. These reviews address the following important aspects that need to be considered in caring for patients supported with an LVAD.

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Self-care of LVAD patients

Self-care is a process of maintaining health through health-promoting practices, symptom monitoring and managing symptoms when they occur (Fig. 1) [14]. LVAD patients have to perform several self-care activities that are related both to heart failure and to the LVAD. Self-care related to heart failure includes activities aimed at self-care maintenance (e.g. taking medication and regular exercise), symptom monitoring (e.g. weight changes) and symptom management (e.g. taking extra diuretics if there are symptoms of fluid retention) [14]. Some aspects of general heart failure self-care also apply to LVAD patients, but there are a number of additional self-care behaviors that the LVAD supported patient need to perform in order to live optimally with the device. LVAD patients need to take care of the driveline exit site wound and protect the driveline itself, control infections, ensure adequate nutrition, exercise regularly, be compliant to the medical therapy (anticoagulants in particular), take good care of the controller and be familiar with system alerts and alarms [15,16]. Furthermore, on top of the heart failure-specific self-care monitoring activities, LVAD patients need to monitor signs of infections, anticoagulant dose, fluid balance and the power supply [14–17]. In case of alarms, patients and their caregivers must know the appropriate measures to be taken. LVAD patients are often instructed to call a healthcare provider in case of an alarm function, shock from the automatic implantable cardiac defibrillator (AICD), weight gain, unexpected weakness, worsening functional capacity, shortness of breath, fever or any change from baseline. The health provider, most commonly the LVAD coordinator, will either instruct the patient what measures are required or share the emergent situation with the physician in charge. In the end of the disease trajectory of living with an LVAD, priorities in self-care might need to be redefined and the support needed from families or caregivers might also change. Oral medications aimed at treating heart failure and diuretics withdrawal should be considered and the importance of symptom monitoring and management could be less strict. Patients or their caregivers should still take care of the driveline exit site wound and protect the driveline. Performing regular exercise and maintaining adequate nutrition should be encouraged to a certain stage and abandoned as the disease progresses. The caregivers’ response to system alerts and alarms as well as deactivating the AICD should be discussed at earlier stages.

FIGURE 1

FIGURE 1

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Worries and uncertainty

Although patients sometimes describe the time after LVAD implantations as ‘making a new start’ [18], they also have concerns about the future, with regard to survival, care needs, potential complications and financial concerns [6▪▪,7,8▪]. The need to stay connected, either to batteries or the domestic power supply, is a matter of concern and anxiety to both the patient and caregivers.

Patients might also worry about being a physical or financial burden to their families [7]. In heart failure patients, inadequate guidance on how to respond to a medical emergency was highlighted as a particular source of anxiety [19] and the same can be expected in LVAD patients.

Although LVAD as Destination Therapy has not been recommended for patients with certain psychosocial issues or psychiatric disorders [20], LVAD supported patients might face unexpected challenges coping with life. Psychosocial problems among LVAD patients often include adjustment disorders comparable to those of patients having undergone HTx [21].

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Role of family and caregivers

As a result of worsening and debilitating end-stage heart failure, patients’ and families’ behaviors and roles within the family often changed even before the LVAD implantation, as their lives revolve around the end-stage heart failure patient who is considered to have limited life expectancy and often suffers from severe heart failure symptoms. After the LVAD implantation, the roles in the family might shift from ‘living the last days of life’ to living longer and ‘making a new start’ [22▪]. Due to the need for constant management of the device, caregivers have a very important role in managing a complex daily regimen. Caregivers and patients need practical skills and have to deal with psychosocial and emotional issues. In addition to the caregivers’ positive feelings regarding the patient's increased survival and quality of life they may suffer from a loss of social contacts, work, income or a loss of health [22▪,23].

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COMMUNICATION

Open and clear communication is vital to ensure good quality of care at the end of life of the patient supported with an LVAD, his family and caregivers. General communication rules are applicable to all chronically ill patients, but there might be some more specific issues relevant to heart failure patients and others specifically relevant to LVAD patients. Improving communication between the attending physician and the seriously ill patient and family has been defined by chronically ill patients and family members as a key factor related to quality of end-of-life care [24,25▪]. Good communication about the nature of the disease is described as a primary need, identified by heart failure patients and their caregivers [18]. They described the importance of an open, two-way dialogue about the patient's condition. [18]. However, cognitive problems and fatigue might pose barriers to active communication [26]. Important issues in communication that are acknowledged in recent literature include a comprehensive assessment of understanding and needs, planning for the future, including advance directives, discussing the potential need for device withdrawal and symptom management.

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Comprehensive assessment of understanding and needs

For survival with an LVAD and in order to have an optimal quality of life, patients and their caregivers need to understand the practical consequences of LVAD treatment and learn to perform self-care. Patients also need to understand their prognosis and have a realistic view and expectations of their future. It is advocated that advance care planning and the potential need for device withdrawal are discussed in the preoperative discussion (before LVAD implantation), in addition to informed consent [7,27].

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Planning for the future

An open and clear discussion addressing expectations with regard to survival, consequences of the treatment for the patient and family and ‘what to do in case of…’ needs to be included in the management of LVAD patients. [8▪,19].

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Advance directives

Advance directives refer to discussing preferences regarding the possible need for therapeutic interventions such as cardiopulmonary resuscitation or mechanical ventilation with patients, families and caregivers. Advance directives are recognized as important for the quality of end-of-life care in LVAD patients [28,29]. However, many patients never have advance directives, and among those patients who do have advance directives, the possible need for withdrawal of the LVAD support at the end of life is often not mentioned [28].

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Discussing the potential need for device withdrawal

It is important to realize that if LVAD support will no longer meet its goal (to prolong life and improve quality of life), mechanical support is no longer indicated and can be withdrawn [27,29]. Preparing the patient, his family and caregivers (preparedness planning) for those moments in end-of-life care is important in order to reduce the distress and ethical dilemmas in both the patients’ families and healthcare providers during this critical situation.

In the professional literature there has been a lot of discussion on how to place withdrawal of LVAD support within the legal and ethical perspective [27,30]. As LVAD support is not seen as a replacement therapy, withdrawing such a support is described as ethically and legally permissible and is considered different to assisted suicide or euthanasia [27,28]. As many LVAD supported patients also have an AICD, it is also appropriate to deactivate those functions (defibrillation, not pacing) as part of end-of-life care to avoid the risk of patients being shocked [6▪▪,31]. There may be a great variability in how patients and families from different cultures perceive the discussion to discontinue the LVAD support or other issues that might arise during the withdrawal process [6▪▪,9]. No new papers have been published recently regarding practical issues in withdrawing LVAD support, though a call for a structured procedure to be used as a standardized checklist has been suggested [27,32].

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Symptom management at the end of life

In case the LVAD support is withdrawn, certain symptoms including dyspnea, anxiety, agitation, pain and noisy breathing are anticipated. At the end-of-life care, these symptoms can be treated with a combination of an opioid and benzodiazepine such as fentanyl and midazolam, titrated to comfort [6▪▪]. Noisy breathing may be helped by anticholinergics (e.g. scopolamine), repositioning and minimizing ongoing provision of fluids. Deep suctioning is generally discouraged. Cessation of LVAD function may be followed abruptly by pulmonary edema or thrombosis.

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TEAM APPROACH

Add case here illustrating the need and value of team approach (Box 1)

Box 1

Box 1

Considering the complex care of LVAD supported patients, a multidisciplinary approach is needed preimplant, postimplant and also during follow-up, as illustrated in the case study. Heart failure teams often include different professionals who aim to improve and coordinate care along the continuum of heart failure to improve outcomes such as reduced hospitalization and decreased mortality rates [1▪▪,33]. Collaboration between heart failure teams, LVAD teams and cardiac rehabilitation teams is essential to provide optimal care for patients supported with LVADs. One study specifically on LVAD patients, reported that a multidisciplinary approach significantly decreased length of hospitalization and costs after LVAD implantation, mostly related to decreases in cost and time of routine non-ICU care and reduction in 30-day readmission rates [33]. Several LVAD implanting centers keep their patients in a follow-up program, but often, all patients cannot stay in their care and many patients return to smaller communities that are not always comfortable or used to LVAD care [6▪▪,9].

Professionals who must have a role in the comprehensive treatment and care of LVAD supported patients are: cardiologist, cardiac surgeon, nurse, social worker, nutritionist, rehabilitation physiologist, palliative care professional and psychologist. Other team members can include clinical engineers, technicians, perfusionists and a pharmacist [5,34–36]. It is advised that the primary care physician be involved in the whole process of LVAD candidacy, implantation and postoperative care and be familiar with the special needs of the follow-up maintenance.

In addition to the professional team, family members or other care providers should be included in the discussion and planning of treatment and care. An LVAD coordinator has a major role in educating and training patients and caregivers, beginning during the post operative period and continuing during the long-term follow-up visits. It is critical that the LVAD coordinator maintains the open and continuous communication between all the different healthcare providers, the patient, his family and caregivers.

Adequate cardiac rehabilitation plays a central role in the patient's recovery and some LVAD centers provide specific LVAD rehabilitation programs, while others refer patients to a community rehabilitation program [5,36].

Palliative care teams can be consulted and incorporated in the team to optimize end-of-life care for LVAD supported patients, addressing symptom management and physical, psychosocial and spiritual aspects of care in addition to assisting with clinical decision-making regarding a variety of scenarios, including device deactivation or replacement [7,37▪]. Psychosocial support for patients and their families might be provided by psychiatric care providers, social services, or palliative care providers [8▪].

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CONCLUSION

Patients who have received an LVAD have often made a shift from a grim prognosis to improved survival. However, patients and their families are in need of education and support to cope with the practical and also psychological and social consequences of the LVAD implantation. In addition to treatment and care of their underlying heart failure, patients and their caregivers face LVAD-related needs for treatment and self-care. Worries, uncertainties and inadequate support may decrease quality of life and necessitate additional professional support. LVAD-related needs gradually shift from improving prognosis to reducing suffering and distress at the end-of-life care. Evaluation of the patient's needs and communication between the closest healthcare provider and the patient, family and caregivers on end-of-life issues should be encouraged as part of the care for the LVAD supported patient.

Communication with LVAD patients and their caregivers needs to be open and address consequences of the LVAD implantation for daily life and for the future, including advance directives. Since the treatment with an LVAD as Destination Therapy is a relatively new treatment, there is still a need for development of practical guidelines, communication protocols and patient and family interventions. The research field on outcomes of LVAD treatment, optimal management and complications is still young and there are knowledge gaps on optimal ways to teach patients and families how to cope with LVAD treatment and how and when to discuss end-of-life issues. A strong collaborative relationship between patient and caregivers and members of the heart failure team, LVAD team and cardiac rehabilitation team is essential to provide optimal care for patients supported with an LVAD.

There is no disclosure of funding received for this work from any of the following organizations: National Institutes of Health (NIH); Welcome Trust; Howard Hughes Medical Institute (HHMI); and other(s).

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Acknowledgements

None.

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Conflicts of interest

There are no conflicts of interest.

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REFERENCES AND RECOMMENDED READING

Papers of particular interest, published within the annual period of review, have been highlighted as:

  • ▪ of special interest
  • ▪▪ of outstanding interest

Additional references related to this topic can also be found in the Current World Literature section in this issue (pp. 118–119).

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REFERENCES

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Comprehensive multidisciplinary guidelines addressing care of heart failure patients, indications for VAD and palliative care issues.

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Keywords:

communication; end of life; palliative care; team; ventricular assist device

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