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To outline symptom management in, as well as offer a home-based protocol for, patients with advanced heart failure (HF).
The terms palliative care and heart failure were searched in PubMed and relevant databases. All articles were reviewed. The specific medical management protocol was developed by the “HeartFull” collaborative team at the Temmy Latner Centre for Palliative Care in Toronto, Ont.
Educating patients about advanced HF and helping them understand their illness and illness trajectory can foster end-of-life discussions. Home-based care of patients with advanced HF that includes optimizing diuresis can lead to improved symptom management. It is also hoped that it can reduce both patient and health care system burden and result in greater health-related quality of life for patients with advanced HF.
This article provides an overview of how to manage common symptoms in patients with advanced HF. The home diuresis protocol with guidelines for oral and intravenous diuretic therapy is available at CFPlus.*
Expliquer la prise en charge des symptômes et offrir un protocole à domicile à cet effet aux patients souffrant d’insuffisance cardiaque avancée.
Les expressions en anglais palliative care et heart failure ont servi à une recension dans PubMed et d’autres bases de données pertinentes. Tous les articles ont fait l’objet d’une revue. Le protocole de prise en charge médicale en question a été élaboré par l’équipe de collaborateurs « HeartFull » du Centre de soins palliatifs Temmy Latner à Toronto, en Ontario.
L’éducation des patients à propos de l’insuffisance cardiaque avancée pour les aider à comprendre leur maladie et sa trajectoire peut faciliter les discussions en fin de vie. Les soins à domicile aux patients souffrant d’insuffisance cardiaque avancée qui comportent une diurèse peuvent améliorer le contrôle des symptômes. Il est à espérer que la stratégie puisse réduire à la fois le fardeau du patient et le système de santé, et se traduire par une meilleure qualité de vie sur le plan de la santé chez les patients atteints d’insuffisance cardiaque avancée.
Cet article offre un aperçu de la prise en charge des symptômes communs chez les patients souffrant d’insuffisance cardiaque avancée. Le protocole de diurèse à domicile, de même que des lignes directrices pour une thérapie diurétique tant par voie orale qu’intraveineuse se trouvent en anglais dans CFPlus*.
You have come to the hospital to visit your patient Frank—a 78-year-old man with congestive heart failure (HF), hypertension, and diabetes—who was admitted with a decompensation of his HF. For 4 days he received intravenous (IV) administration of furosemide. Now Frank is responding well to diuresis and is almost ready for discharge. Unfortunately, this is his third admission this year for decompensated HF. Each time he has needed IV furosemide.
Frank lives alone in a small apartment. His wife of 54 years passed away last year. He has a daughter who lives in the same city but is quite busy with her family. He has 3 grandchildren.
Frank’s medical history includes the following: ischemic cardiomyopathy (New York Heart Association class IV), ejection fraction of 20%, a previous myocardial infarction, coronary artery bypass grafting, atrial fibrillation, hypertension, type 2 diabetes, and chronic kidney disease. Several years ago he received a cardiac resynchronization therapy (CRT) device with defibrillation. Frank takes the following medications: 25 mg of metoprolol twice daily, 25 mg of captopril 3 times daily, 2.5 mg of warfarin daily, an 80-mg oral dose of furosemide twice daily, 10 mg of isosorbide dinitrate 3 times daily, 500 mg of metformin twice daily, 20 mg of rosuvastatin daily, 150 mg of ranitidine daily, and multivitamins daily.
You know that Frank has been struggling with symptoms of his advanced HF for the past year. He has shortness of breath with minimal exertion. He has peripheral edema. He also describes anorexia and fatigue. He gets quite anxious when he is short of breath.
You have tried to discuss his illness with him and to start advance care planning; however, he has been reluctant to discuss the future.
When you see him in the hospital this time, he asks you why he feels this way and why he has to keep coming to the hospital.
The terms palliative care and heart failure were searched in PubMed and relevant databases. All articles were reviewed. The specific medical management protocol was developed by the “HeartFull” collaborative team (created by J.A. and S.M.) at the Temmy Latner Centre for Palliative Care in Toronto, Ont, as there is a gap in the literature around medical management of patients with HF at the end of life. The “HeartFull” model was developed collaboratively by cardiology, palliative care, and primary care specialists, as well as using community resources, and it provides education modules and therapeutic guidelines for diuresis in the home.
Approximately 500 000 Canadians have congestive HF. More than 50 000 new patients are diagnosed each year and more than half of new cases occur in people older than age 80.1 Approximately 50% of patients with HF die within 5 years of diagnosis.2 The condition is responsible for a high burden of hospitalization for symptoms that are currently difficult to manage in the ambulatory setting.3–5
The Heart Failure Society of America defines advanced HF as “those patients who have advanced, persistent HF with symptoms at rest despite repeated attempts to optimize pharmacologic and nonpharmacologic therapy,” as shown by 1 or more of the following factors: frequent hospitalizations (≥ 3 per year), chronic poor quality of life with inability to accomplish activities of daily living, need for intermittent or continuous intravenous support, or consideration of assistive devices as destination therapy.6
Damage to ventricular function results from numerous causes, including myocardial ischemia or infarction. Decreased left ventricular function (LVF) leads to symptoms of forward HF (low output), which causes confusion, fatigue, anorexia, and renal dysfunction. Decreased LVF also leads to backward pressure (high filling pressure) on the cardiopulmonary system resulting in dyspnea, ascites, liver congestion, and peripheral edema. Additionally, decreased LVF causes a cascade of neurohormonal mediators such as the renin-angiotensin-aldosterone system, the sympathetic nervous system, and tumour necrosis factor. These neurohormonal mediators sustain and increase damage to the ventricles, which sets up a vicious cycle whereby decreased LVF causes neurohormonal changes that worsen LVF. This explains why HF medications (β-blockers, angiotensin-converting enzyme inhibitors [ACEIs], angiotensin II receptor blockers) are effective. They work by decreasing the effect of the neurohormonal cascade, limiting the effect on ventricular damage and improving symptoms. These not only improve symptoms but also decrease mortality.7 In addition to symptoms of dyspnea, fatigue, and confusion, patients with advanced HF experience pain, anorexia, depression, and anxiety. Numerous studies show that patients with end-stage HF experience symptoms similar to patients with cancer at the end of life.7
There are several additional challenges in caring for those with non-malignant illnesses such as HF compared with caring for patients with an oncologic illness. Models of palliative care, developed primarily for those with oncologic illness, need to be adapted to acknowledge these challenges, as an increasing number of patients being referred for palliative care have non-malignant illness such as HF, chronic obstructive pulmonary disease, and dementia.
One of these challenges includes the trajectory of HF being much more variable and unpredictable than the trajectory for most oncologic illnesses. There are few reliable prognostic indicators that predict when patients are entering the end phase of their illness. Figure 18,9 presents a trajectory comparison between a patient with end-stage HF and that of a patient with cancer. For patients with HF, the trajectory is often stable for a period of time, and as their disease progresses, they experience repeated decompensations with return to near baseline function and health.8–11 This is in contrast to the somewhat more predictable trajectory for patients with cancer at the end of life, where there is generally a steady decline in function in the last 3 months of life.12 In the absence of prognostic indicators and with the variability in function, health care practitioners should focus on the needs and goals of this patient population rather than solely on prognosis.
A second challenge in caring for patients with end-stage HF is that patients and caregivers often lack understanding of the terminal nature of HF.10,11,13 While the reasons for this are unclear, there are several possibilities. First, there are no obvious time points or events that clearly herald the transition from active care to palliative care. Unlike chemotherapy for the patient with cancer, therapy for HF does not lose efficacy or stop. Medications used to treat chronic HF are the same as medications used to palliate end-stage HF.12 Additionally, there are fewer diagnostic approaches that definitively illustrate disease progression (compared with computed tomography and magnetic resonance imaging in oncology). For patients with cancer, these transition points can provide an opportunity for health care providers to discuss disease progression and for patients to gain understanding of their illness.
Thus, in the care of patients with HF, the unpredictable trajectories and the lack of obvious transition points in disease progression can make conversations about goals of care, values, and advance care planning with these patients quite challenging.11,14–16
From our experience, it is useful to begin by educating patients and caregivers about the natural history of HF. By drawing the trajectory of HF (Figure 1)8,9 for patients and caregivers, you can explain the variable nature of the illness and explain that each decompensation is a time when death is possible. You can explain that the diuresis and other management during a decompensation is an attempt to regain previous function; however, at some point that will not be possible. This can help patients and families better understand the variable trajectory and the uncertainty associated with HF. Once a patient has a better understanding of the illness and illness trajectory, you can begin to discuss his or her values and goals for the future and prepare for end-of-life decisions. Box 1 provides examples of how to begin these discussions with patients. Recognizing that these conversations need to occur repeatedly can improve patient understanding.7,13 Also, whenever possible, include the patient’s caregivers in these conversations.
Examples of introductory statements include the following:
Based on your patient’s readiness to have these discussions, you can get more specific about values, goals, and planning:
For more information about advance care planning discussions, visit the Speak Up Campaign website, www.advancecareplanning.ca, for tools and resources; this campaign is an important initiative to help physicians support their patients during this time. Articles by Ahluwalia et al17 and Sudore and Fried18 are also good resources for advance care planning discussions.
You spend time explaining to Frank the ups and downs of the HF trajectory and, in fact, when you draw the trajectory for him he realizes that this is the nature of the illness and not something that he is doing wrong. You tell him that when he gets home from the hospital it would be a good time to have a discussion about the future and how he wants his care going forward.
A few weeks later he comes to your office with his daughter for a conversation regarding his goals of care. During the discussion he tells you that he now understands that he is nearing the end of his life and he does not want to prolong this phase. He wants to stay home as long as possible and avoid hospitalizations and further investigations. He wants you to focus on his comfort. He is not afraid of dying but wants to make sure he does not suffer from pain or symptoms. Given these expressed values and goals, you recommend against cardiopulmonary resuscitation and defibrillation. You explain that his cardiac device needs to be reprogrammed to avoid shocks at the end of life. Frank thinks (as do many patients) that he needs the defibrillator all the time to live.
Many patients with HF are treated with specialized cardiac devices. These devices function as pacemakers, and the pacemaker might have additional functions such as cardiac resynchronization therapy (CRT) or a defibrillator or both. Some patients have a device that functions only as an ICD. A CRT pacemaker coordinates the contractions of both the right and the left ventricle and improves heart function, improving the quality of life and symptoms for many patients. Defibrillation is another function that is part of some, but not all, implantable pacemaker devices, which means the device is programmed to detect malignant arrhythmias and provide an electric shock to restore normal rhythm. Some devices only provide defibrillation; these are known as implantable cardiac defibrillators. A CRT pacemaker can be equipped to provide defibrillation; this device is then called a cardiac resynchronization therapy defibrillator.
It is important to know that the defibrillator function of any implantable device is independent from pacing or resynchronization therapy. The defibrillator itself can be deactivated and the patient can continue to receive the symptom improvement therapy from CRT. Defibrillator deactivation is important when patients want to focus on comfort, as the defibrillator might provide electric shocks to the patient at the end of life, which can be distressing and uncomfortable.
There are often many opportunities to discuss the need for and use of the ICD. This can be a challenging conversation because patients and caregivers might have misconceptions about the ICD. Table 1 addresses some of these patient misconceptions.
The following is an outline of our collaborative approach to care for patients with advanced HF. We have developed this approach through collaboration with cardiology, palliative care, and primary care specialists, as well as using community resources. While we acknowledge that all of these elements might not be achievable in every situation, they can be adapted where possible by others.
The protocol for home diuresis that we developed provides stepwise guidelines for assessment, management, and monitoring. It is used only when patients’ goals are for comfort-oriented care. Their goals are such that they wish to remain at home, make comfort a priority, and avoid hospitalizations. The protocol is initiated when patients experience a worsening of symptoms attributed to HF. This protocol is available at CFPlus.*
Home-based care of patients with advanced HF that includes optimizing diuresis can lead to improved symptom management and possibly a decreased number of hospitalizations. In turn, we hope it can reduce both patient and system burden and result in greater health-related quality of life for patients with advanced HF.
With this plan you have been managing Frank at home for the past 4 months. He has had follow-up with his cardiologist for ICD deactivation. He has required 2 escalations of his furosemide dose, and in both cases doubling his oral dose for 5 days was sufficient. He has become weaker over this time and spends most of each day in bed. He is relieved to be at home. You have discussed transfer to a palliative care facility in the near future, as he does live alone and might not have sufficient supports as his illness progresses.
This article describes a collaborative approach to care for patients with advanced HF. Home-based care of patients with advanced HF that includes optimizing diuresis can lead to improved symptom management and possibly a decreased number of hospitalizations.
Many people contributed their experience and expertise to developing the Heartfull Collaborative. We thank Drs Heather Ross, James Downar, Jana Pilkey, and Debbie Selby for their contributions.
*The Temmy Latner Centre for Palliative Care protocol for home diuresis is available at www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.
This article has been peer reviewed.
Cet article a fait l’objet d’une révision par des pairs.
All of the authors of this manuscript are responsible for the reported findings. All participated in the concept and design; analysis and interpretation of the data; drafting or revising or making intellectual contributions to the content of the manuscript; and approving the manuscript submitted for publication.