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Hope for the Best, Plan for the Worst: Integrating Palliative Care in Mechanical Circulatory Support


Jill Steiner, MD
Jills8@cardiology.washington.edu

Jennifer Beckman, ARNP
Jabeckma@uw.edu

Stephanie Cooper, MD
SCooper@cardiology.washington.edu

Jason W. Smith, MD
Jwsmith@uw.edu

James N. Kirkpatrick, MD
Kirkpatj@cardiology.washington.edu

Claudius Mahr, DO
Cmahr@uw.edu
University of Washington
Seattle, WA, USA



Many patients who have received ventricular assist devices (VAD) will die with their devices. This difficult reality continues to cause distress for patients, families, and care teams. Over a third of patients with destination therapy (DT) VADs will die within three years [1]. To complicate matters further, according to INTERMACS data, 40% of patients cross over between bridge-to-transplant (BTT) and DT strategies. Despite clear improvements in longevity, patients with VADs remain severely, often tenuously, ill and may die unexpectedly, not infrequently as a complication of VAD support. As many as 70% of patients with VADs experience complications ranging from infection and bleeding to device malfunction and stroke [2]. Quality of life is still markedly better than without these devices, [3] but this speaks mostly to the challenges of living with end stage heart failure. As the risks of VAD therapy may not truly be appreciated until they become catastrophic realities, patients and family members may feel ill-prepared to confront the realities of life "on pump." [4]

Given the complexity of the described patient population, it is imperative that a multidisciplinary approach to care planning take place. VAD implantation will increase blood flow, however non-cardiac comorbidity burden will not magically improve after implantation. As such, it is an inherent responsibility of the mechanical circulatory support (MCS) team to offer ongoing advance care planning, early in the process and guided by the expertise of a palliative care specialist. The mantra of "hope for the best, plan for the worst" encourages disease management and addresses expectations of both the care team and the patient/family cohort alike.

An important consensus is developing surrounding the essential nature of palliative care involvement in the MCS population. ISHLT and ACCF/AHA guidelines recommend the addition of a palliative care specialist to the care team [5,6]. In addition, the Centers for Medicare and Medicaid Services (CMS) and the Joint Commission (JC) have updated their definitions of the core multidisciplinary team to require the inclusion of a palliative care specialist [7,8].

Clinicians who care for patients with advanced heart failure often have a holistic orientation toward patient care. The importance of a palliative care specialist support may be in question: "Why do patients need palliative care consultation, especially early in the disease process?" Contrary to common misperception, palliative care is not the equivalent of hospice and does not mean withdrawal of care. Instead, its focus is on symptom management, advance care planning, easing suffering, and discussions surrounding goals of care. It can and should be instituted alongside life-prolonging interventions [1,9].

Palliative care clinicians expertly facilitate communication between patients, family members, and medical providers, which is particularly important in the setting of psychosocial distress or uncertainty in goals of care [1]. Many barriers to effective advance care planning have been described, including unpredictable disease trajectory, cultural differences, and impaired cognition or decision making due to critical illness and impaired cerebral circulation [10]. These complexities argue for the involvement of palliative care specialists who have a unique skillset to address these problems. Patients may perceive the process of MCS evaluation as rushed, without time to digest the information presented before making a decision [11]. When brought in early in the process of preparedness planning, [1] palliative care specialists can foster communication about alternative therapies and discussion regarding the potential need for other therapies after VAD, such as parenteral nutrition, mechanical ventilation, or dialysis. Characterization of acceptable quality of life and how that may be affected by having a VAD is also explored. In addition, preparedness planning can include discussion of patients' wishes if the VAD fails or becomes infected, [10] or if the patient wishes for device deactivation, with particular attention toward end of life. Palliative care for patients with VADs, as shown in cancer, may actually prove to prolong life and improve quality of life [9].

MCS team members are well-versed in treating heart failure symptoms such as fatigue and shortness of breath, but they may be less comfortable managing non-cardiac symptoms like chronic pain, anxiety, difficulty sleeping, and loss of appetite. Palliative care specialists provide extensive expertise in symptom management, the need for which increases with disease progression. In fact, they are often more comfortable with focusing on comfort and quality toward the end of life than cardiologists and cardiac surgeons, who are accustomed to providing interventions designed to prolong life. Importantly, palliative care specialists can provide guidance for family members, as well as bereavement and grief counselling after a patient's death.

In addition to the services made available to patients and their families, palliative care specialists can also provide support to MCS team members. Patients with advanced heart failure are a multi-faceted group, often leading to emotional or moral distress on the part of some clinicians who care for them. MCS teams deal daily with an incredibly sick patient cohort and experience both great successes as well as gut-wrenching losses. Support and education in self-care for MCS team members is a critical but under-recognized role of the palliative care specialist.

What is intended to be the exact role of palliative care specialists in the care of patients with VADs, at least according to CMS and JC, is vague. Neither CMS nor JC delineates specific credentials or experience required for palliative care specialists. Activities expected of the specialist are not outlined, and the documents do not specify how the specialist should collaborate with other MCS team members. As such, it is left up to individual institutions to interpret needs and create protocols for palliative care involvement [10]. Rapid growth in demand for palliative care consultation has further strained an already substantial workforce shortage in palliative care [10,12]. Some institutions have suggested training in "primary" palliative care for MCS providers. Other centers have suggested the implementation of nurse screening visits to identify the need for formal palliative care consultation. Creative, resource-efficient models like these are necessary to off-set the growing need, [10] particularly since many institutions still lack formal protocols for the inclusion of palliative care services in the process of VAD implantation [12].

The time has come to firmly integrate palliative care clinicians into mechanical circulatory support care teams, and not merely to appease regulatory requirements. Professional societies' recommendations and those of CMS and the JC formalize this process, but vaguely, and there remains a paucity of information about the effective application of palliative care for patients with VADs [12]. Instead of improvising systems to mark a box on a checklist, we must work to create sustainable, integrated care collaborations upon which patients and their families can depend to improve their lives, and their deaths. ■

Disclosure Statement:


References:

  1. Sagin A, Kirkpatrick JN, Pisani BA, et al. Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study. J Pain Symptom Manage. 2016 Jul 9. pii: S0885-3924(16)30176-2.
  2. Kirklin JK, Naftel DC, Pagani FD, et al. Seventh INTERMACS Annual Report: 15,000 Patients and Counting. J Heart Lung Transplant. 2015;34:1495-1504
  3. Rose EA, Gelijns AC, Moskowitz AJ, et al. Long-term Use of a Left Ventricular Assist Device for End-Stage Heart Failure. N Engl J Med. 2001 Nov 15;345(20):1435-43.
  4. Kirkpatrick JN, Kellom K, Hull SC, et al. Caregivers and Left Ventricular Assist Devices as a Destination, Not a Journey. J Card Fail. 2015 Oct;21(10):806-15.
  5. Feldman D, Pamboukian SV, Teureberg JJ, et al. The 2013 International Society for Heart and Lung Transplantation Guidelines for Mechanical Circulatory Support: Executive Summary. J Heart Lung Transplant. 2013 Feb;32(2):157-87.
  6. Yancy CW, Jessup M, Bozkurt B, et al. 2013 ACCF/AHA Guideline for the Management of Heart FailureA Report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. JACC 2013 Oct;62(16):e147-e239.
  7. Centers for Medicare and Medicaid Services: National Coverage Determination (NCD) for Ventricular Assist Devices. Manual Section Number 20.9.1. www.cms.gov/Regulationsand-Guidance/Guidance/Manuals/downloads/ncd103c1_part1.pdf. 2015. (Accessed August 15, 2016).
  8. The Joint Commission: Certification for Ventricular Assist Devices. https://www.jointcommission.org/certification/ventricular_assist_device.aspx. 2016. (Accessed August 15, 2016).
  9. Lindvall C, Hultman T, Jackson V. Overcoming the Barriers to Palliative Care Referral for Patients with Advanced Heart Failure. J Am Heart Assoc. 2014;3:e000742.
  10. O'Connor NR, Moyer ME, Kirkpatrick JN. Scripted Nurse Visits: A Resource-Efficient Palliative Care Model for Ventricular Assist Devices. Journal of Palliative Medicine, in press.
  11. Bruce CR, Blumenthal-Barby JS, Meyers D. Benefits and Challenges of Early Introduction of Left Ventricular Assist Device Placement: A Patient Centered Perspective. J Am Coll Cardiol. 2015 Oct 20;66(16):1762-5.
  12. Kirkpatrick JN, Hauptman PJ, Swetz KM, et al. Palliative Care for Patients With End-Stage Cardiovascular Disease and Devices: A Report From the Palliative Care Working Group of the Geriatrics Section of the American College of Cardiology. JAMA Intern Med. 2016 Jul 1;176(7):1017-9.



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