In national and international circles, palliative care is now widely accepted in principle as an appropriate and compassionate intervention and approach that can benefit people who are living in the advanced stages of Heart Failure (HF). This imperative to care is gaining momentum in Canada; research evidence from Canadian contexts supports it should be included as an important option for patients and their often exhausted family caregivers. Yet access to palliative care for these patients continues to be hampered, quite often because of the continued hesitancy to talk about it with patients, their families and colleagues.
Although great strides have been made in the quest to preserve life threatened by cardiac disease, HF continues to be a progressive life-limiting illness with an undulating trajectory and a high mortality. It is not uncommon for patients with HF to experience exacerbations in which they are acutely distressed “on the brink of death,” resuscitated and then return home, often at a lower level of function. This focus on cardiac function using combinations of pharmacologic and device therapy, and the promise of a ‘magic bullet’ has served to mute communication about end-of-life issues for patients with HF and their families (1,2). We now know that this approach, especially as patients become seriously ill and are likely to be re-hospitalized, has contributed to their suffering and that of their families. (3)
What do patients in the advanced stages of Heart Failure want?
Patients living with advanced HF have described their preference to have discussions about the possible illness trajectory and their prognosis when they are cognitively intact, yet these discussions are often deferred until patients are ill and hospitalized (4). There is diversity in the information patients want; many desire more information about HF and how it is likely to progress so they can be prepared for the uncertain future (1). Surprisingly, the prognostic uncertainty that has been associated with HF does not currently signal the need for Advance Care Planning in patients or their health care team. Consequently, when patients with HF are seriously ill and hospitalized, they are often without an Advance Care Plan, yet they want honest communication about their condition and its implications in order to plan. Their need is due partly to the increasing demands on family caregivers as HF worsens, leaving patients concerned about the toll on their families and if and how care will be available and coordinated when they are discharged home (3).
Barriers to communication
A study of community-dwelling patients receiving palliative care for advanced HF and their identified care providers revealed layered and significant challenges to communication about end of life issues (5). Talking to patients about the possible introduction and provision of palliative services is sometimes hampered by a number of factors including; a) the strict prognostic criteria into which patients must fit to qualify for these services; b) patients’ views of palliative care as a death sentence; c) health team members’ discomfort in initiating conversations and using terminology related to the possibility of decline and death; d) lack of communication between health care providers and locales of care, and e) societal and disciplinary perceptions about the lack of fit between HF and palliative care (1,2,5). Although the integration of palliative care for patients with HF is now beginning to be discussed in HF and palliative care circles, the continued use of a time-bound 3- 6 month prognosis as an entry point for the majority of specialized hospice/palliative care serves to reinforce palliative care as an indicator of impending decline and death. This is a deterrent to introducing the concept with HF patients. While communication is poor between patients, their families and healthcare providers with regards to end of life issues, so too is communication between the practitioners who function in disciplinary silos of HF and palliative care. Cardiac care has focused almost exclusively on the preservation of life and avoidance of death and this is often viewed as inconsistent with the focus of palliative care. Communication gaps affecting continuity of care are further compounded when patients move physically from community to hospital (and back) for care and when the “most responsible practitioner” directing their medical and/or nursing care changes. Frequently, when the physical context of care changes the person who is directing the care plan, and subsequently, the plan itself also changes. Documentation practices and forms to describe and prescribe care also tend to change with the agency or institution in which care is received. These system issues challenge transmission of information that is so essential for patients and their care providers if they are to reach a common understanding about the preferred focus and goals of care. New thinking and resilient models of care are required in response to these multiple and complex challenges when patients with HF transition across the illness trajectory. An innovative Canadian multi-centre study is currently underway to do just that. Lingard and colleagues are investigating how integration of HF and palliative care is negotiated amongst and between care teams with the intent of developing an approach for HF patients and their caregivers that is effective across care contexts and illness experiences (6).
Implantable Cardioverter Defibrillators
An emerging and significant issue affecting goals of care is the growing number of patients with HF who are candidates for an Implantable Cardioverter Defibrillator (ICD) to prevent sudden cardiac death. These devices prevent death that is caused by ventricular arrhythmia; death that occurs in the absence of arrhythmia would not initiate an ICD shock. ICDs may have been implanted when the patient was relatively well; our research has found that pre-implant discussions about ICD for the purpose of primary prevention seldom encouraged patients to contemplate death by any other cause (other than sudden death) that could occur at a point later in life (7). Written patient education materials that patients accessed prior to receiving the device focused on survival and living with the device. No links were made in these materials to the ICD and Advance Care Planning (8). Few ICD recipients understood that deactivation of the device was a possibility at some point in the future, yet suffering from ICD shocks has interfered with a peaceful death for patients receiving palliative care. Concerns about the logistics of ICD deactivation have surfaced from palliative care team members in the community; who would deactivate, when, under what circumstances (5). Clearly, communication about the potential for deactivation and the implications of dying with an ICD at some point in the future must be discussed with those who are receiving palliative care. Members of the palliative care team have also described their own need to understand ICD function and the implications for patient care.
Research is required and underway to further understand how care providers can best help patients living with advancing HF and possibly ICD to discuss end of life issues, including palliative care and Advance Care Planning, in a timely, honest and compassionate way. Communication strategies that are sensitive to the challenging needs and contexts in which care occurs have been proposed to ease conversations between clinicians, researchers, patients and their caregivers (9).
1. Barclay, S., Momen, N., Case-Upton, S., Kuhn, I., Smith, E. End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis. British Journal of General Practice 2011; DOI: 10.3399/bjgp11X549018. [E-pub ahead of print].
2. Green, E., Gardiner, C., Gott, M., Ingleton, C. (2011). Exploring the extent of communication surrounding transitions to palliative care in heart failure: The perspectives of health care professionals. Journal of Palliative Care, 27 (2), 107-116.
3. Strachan, P.H., Ross, H., Rocker, G.M., Dodek, P.M., Heyland, D.K. for the Canadian Researchers at the End of Life Network (CARENET) (2009). Mind the Gap: Opportunities for Improving End-of-Life Care for Patients with Advanced Heart Failure. The Canadian Journal of Cardiology, 25(11), 635-640.
4. Caldwell(Strachan), P.H., Arthur, H.M., Demers, C. (2007). Preferences of Patients with Heart Failure for Prognosis Communication. Canadian Journal of Cardiology, 23(10), 791-796.
5. Kaasalainen, S., Strachan, P., Brazil, K., Marshall, D., Willison, K, Dolovich, L., Taniguchi, A., Demers, C. (2011). Managing palliative care for patients with advanced heart failure. Canadian Journal of Nursing Research, 43(3), 38-57.
6. Lingard, L., McDougall, A., Schulz, V., Shadd, J., Marshall, D., Strachan, P.H., Tait, G., Arnold, M., Kimel, G. Palliative care on the heart failure care team: An innovative research methodology. In Press. Journal of Pain and Symptom Management.
7. Strachan, P.H., Carroll, S.L., de Laat, S., Schwartz, L., Arthur, H.M. (2011). Patients’ perspectives on end-of-life issues and implantable cardioverter defibrillators. Journal of Palliative Care, 27(1), 6-11.
8. Strachan, P.H., de Laat, S., Carroll, S.L., Schwartz, L., Vaandering, K., Toor, G.K., Arthur, H.M. Readability and content of patient education material related to implantable cardioverter defibrillators. Journal of Cardiovascular Nursing. 2011 Sep 16. DOI: 10.1097/JCN.0b013e31822ad3dd. [E-pub ahead of print].
9. Fitzsimons, D., Strachan, P. H. (2012, June). Overcoming the challenges of conducting research with people who have advanced heart failure and palliative care needs. European Journal of Cardiovascular Nursing, 11(2), 248-254.