Treatment Checklist for Advanced Heart Failure
Our treatment of folks in end-stage heart disease surely needs some improvement,” said the senior public health analyst in the Department of Health and Human Services (HHS). Recalling her thoughts as her mother entered advanced heart failure (HF), she said she felt the care was not well managed. It was troubling to her, and she is knowledgeable about medical treatment and how to deal with the medical system, much more so than the average person. For most others, it can be even more troublesome.
What the HHS official was concerned about was more the management than the treatment, if one limits the word “treatment” to drugs and procedures. Of course, treatment does include more than drugs and procedures, but in advanced HF, it is easy to focus on that with which we as providers are most comfortable (ie, drugs and procedures). (This is not unique to HF; in one study, only 10% of published treatment guidelines had “significant palliative care” content.1) It is good to be reminded that there is more to treatment, especially in advanced HF. One approach is to consider two domains: drugs and procedures; and patient and caregiver quality of life.
DRUGS AND PROCEDURES
Heart failure used to be considered simply decreased mechanical pumping action of the heart, often due to inadequate oxygen supply from narrowed heart arteries. Now it is understood to be a complex neurohumoral phenomenon. The HF complex includes increased cytokines, such as tumor necrosis factor and interleukin 6, which cause discomfort and cachexia; changes in pulmonary compliance that cause stiffer lungs; and brain dysfunction unrelated to hypoxia.2
As a disease, HF can produce three different presentations, each with important drug and procedure differences. Aronow3 recently outlined these differences. In brief, systolic failure is characterized by poor forward pumping of the ventricles. Drugs often used include diuretics, angiotensin-converting enzyme inhibitors (ACEIs), beta blockers (BBs), and aldosterone antagonists (if certain conditions are met). Digitalis may be used, especially if rate control is needed, although one study showed digitalis to be detrimental in patients 85 years and older.4 While, in general, calcium channel-blocking drugs (CCBs) are avoided, vasoselective CCBs may be acceptable.
Diastolic failure is characterized by stiffness of the ventricles, with slower filling in diastole. Diuretics are used cautiously if at all. Digitalis is avoided if the patient is in sinus rhythm. CCBs are acceptable.
Mixed failure has both components. Drug treatment requires a delicate balance that recognizes the principles for each component.
Treatments can also be described by heart failure stage:3
Stage A encompasses people at high risk for HF, without manifest heart damage. Treatment is aimed at prevention, and ACEIs and aspirin may be useful in many conditions.
Stage B is the level at which some structural change has become manifest, such as coronary artery obstruction or valvular dysfunction. Treatment is aimed at repairing the damage (eg, revascularization) and BB and ACEI drugs.
Stage C encompasses symptoms with physical activities. Treatment includes repair, vigorous control of diet and blood pressure, emphasis on regular systematic physical activity, careful monitoring of potassium, magnesium, and other electrolytes, and consideration of warfarin use.
Stage D is marked by symptoms at rest, despite maximum treatment. It includes all of Stage C therapies, and possibly other drugs. Nesiritide has been used, but recent studies suggest it does not provide significant benefit.5 More radical interventions such as heart transplant and ventricular assist devices are sometimes considered.
Dyspnea is usual in stage D. Suggestions to treat dyspnea include acetaminophen with codeine for mild dyspnea, and oral morphine for moderate to severe dyspnea. If secretions are a problem, Charette6 recommends these possible interventions: If secretions are dry, nebulized saline may be useful. If secretions are wet and troublesome, hyoscyamine derivatives and transdermal scopolamine preparations might be useful. Another approach is atropine eye drops placed under the tongue (see Charette6 for dosage). These are not FDA-approved uses of these medications. Be cautious of anticholinergic side effects with all interventions to dry secretions.
HF Stages parallel HF Classes, as defined by the New York Heart Association (NYHA), except that NYHA definitions focus on dyspnea.
PATIENT AND CAREGIVER QUALITY OF LIFE
Dutch investigators outlined four activity (or “work”) domains that end-stage HF patients deal with, or want to deal with.7 First is “managing illness,” such as keeping up with medications. Keeping up with drug and other therapeutic regimens is often much more complicated and becomes much more of a burden for patients with HF, as compared to other diseases such as lung cancer.8
Second in the Dutch study was “everyday work,” such as managing fatigue, which includes organizing tasks like eating and toileting in the face of decreased energy reserves and shortness of breath.
Third was “biographical work,” which means maintaining their image to others in spite of increased disability and decreased social contacts.
Fourth was “arrangement work,” which includes issues of arranging transportation, and adapting living arrangements to compensate for disability.
The investigators assert that this model helps caregivers understand what is important to patients. It also should suggest to clinicians changes in the organization of medical care. For example, if arrangements for mobility occupy considerable work energy by a patient, perhaps clinicians should focus on assisting the patient with that concern as part of their treatment. Perhaps a home visit by a trained nurse or aide could substitute for an office visit.
With the clinicians’ focus on shortness of breath as a measure of HF, pain is often overlooked, especially in the last days of life.2,6 Opiates used for dyspnea usually are suitable for pain control.
Depressive symptoms are not unexpected in HF, a condition that reduces physical capacity and threatens life. Estimates of depression prevalence vary from about 15% to nearly 50%.9 The variation is probably due to small numbers of subjects and different definitions of depression. Depressive symptoms correlate with more rapid decline. The interaction between cytokine production from HF and that from depression has not been fully elucidated, and benefits of depression treatment in HF have not been thoroughly documented. Nevertheless, the potential benefits of cognitive and antidepressant therapy should be considered.
Advice about sexual activity, weight, and use of alcohol is not based on adequate evidence, and there is great variability in the opinions of experts.10 Considerations of patient and caregiver quality of life are included in the two tables presented in this article.
PRE-TERMINAL CONSIDERATIONS (TABLE I)
Treatment Goals
In most cases, “cure” is not a goal, a fact that should be understood by the patient and family. Then it becomes a matter of reducing suffering and extending life in a compromised form.
A vexing problem in advanced HF is its unpredictability. Advanced HF is not like cancer or dementia, conditions in which there is generally an overall steady decline and fairly predictable trajectory. In HF, the condition may appear agonal one day, but improve greatly days later.11 The patient and family have to deal with immediate problems, and at the same time plan for future problems. This variability also affects advance directives. During periods of high symptom load, patients are more likely to agree to Do-Not-Resuscitate orders, but on recovering, many will change their mind.2
Controlling fatigue and dyspnea requires cooperation between the caregiver and patient. Physical therapy and regular physical activity may reduce fatigue by improving muscle efficiency, but patients should also be given permission to rest at times.6
“Hospice” is different from “palliation,” at least to some. Palliative care attempts to maximally manage symptoms, but does not exclude any treatments, and includes psychosocial and spiritual needs.12 Hospice has similar goals, but life-prolonging treatment is not pursued unless it improves comfort. In practice, since HF is generally persistent and irreversible, there may be little conceptual difference between the two.
However, there may be a huge practical difference between palliative care and hospice in the usual feefor- service healthcare system. Medicare, the dominant healthcare insurer for Americans age 65 and older, will pay for more services for patients enrolled in hospice programs than for those who are not. For example, many hospice programs provide brief “sitter” services so caregivers can attend to their own personal needs, such as hair or dental appointments. These are offered under the respite care provision for hospice services. Stage D HF is usually the time to consider palliative and hospice care.
As the patient approaches the terminal phase, marked by repeated hospitalizations and decreased functional capacity, the desired circumstances for the end of life need to be considered. What is the preferred plan of action in the event of severe decompensation? If hospitalization is expected, clinicians can take steps to bypass or expedite emergency room delays, if that is appropriate.
An implanted cardioverter-defibrillator (ICD) will attempt to jolt a dying person back to life. If the time for death has arrived, it can be very disconcerting to the family to see the patient jerk repeatedly as the ICD shocks the chest, causing muscle convulsions. The decision of when to de-program the ICD should be discussed by the clinician, patient, and family. Similarly, the benefit-to-burden ratio of pacemaker insertion is worthy of discussion.
CHECKLIST FOR TERMINAL HEART FAILURE THERAPY (TABLE II)
Palliative or hospice care should already be in place. The usual clinical responses to new symptoms can be curtailed, as listed. Also, noncomfort medications already in place have less value as one approaches death, and treatment can be simplified by eliminating them. Similarly, restrictions on diet and advice for physical activity may be relaxed.
The caregiver needs support as well as the patient. Each day, a spouse may be afraid to check the bedroom where the patient sleeps, afraid to find death. Failure to discuss these feelings contributes to the stress and depressive symptoms of the caregiver.13,14
Who should provide spiritual therapy? Christina Puchalski, Director of the George Washington Institute for Spirituality and Health, says she is often asked that question. Her answer is, “Anyone who deals with the ill and dying.”15 She points out that, while there are those who have had professional training, the rest of us do have tools we can use. One tool is simply listening and presence. Presence means being fully attentive to the person, not preoccupied with drug and procedure decisions.
Patient-centered communication is another spiritual therapy tool. A characteristic of this is to try to understand decisions from the patient’s perspective, what it means to him or her based on his/her beliefs, culture, and experiences.
A third spiritual therapy tool described by Puchalski15 is to take a spiritual history. Questions about faith, beliefs, and wishes will enhance communication and will demonstrate the clinician’s acknowledgment of the importance of spirituality. Spiritual history should be part of the clinical encounter.
Finally, respect for the dying person requires knowledge of the person’s wishes for the circumstances accompanying death. The desired circumstances for the end-of-life situation should be re-visited.
DISCUSSION
A recent study of noncancer patients who died in the hospital indicated that a third of their caregivers felt that the terminal care was less than good, and 8% felt it was bad or very bad.16 With the increasing success in preventing sudden death and prolonging life, the number of people with advancing HF will only increase. It is already the number one cause of hospitalization for older people, and the rate of hospitalization for HF had increased over 175% in 14 years in the most recent tabulation.11,17 Because HF prevalence increases with age, it is an increasing concern in long-term care settings. Clinician skills in both categories—drugs and procedures and patient/caregiver quality of life—is increasingly important.
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10. Riegel B, Moser DK, Powell M, et al. Nonpharmacologic care by heart failure experts. J Card Fail 2006;12(2):149-153.
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13. Boyd KJ, Murray SA, Kendall M, et al. Living with advanced heart failure: A prospective, community based study of patients and their carers. Eur J Heart Fail 2004;6(5):585-591.
14. Markowitz AJ, Rabow MW. Palliative care for patients with heart failure. JAMA 2004;292(14):1744.
15. Puchalski CM. A Time for Listening and Caring; Spirituality and the Care of the Chronically Ill and Dying. New York: Oxford University Press; 2006.
16. Formiga F, Olmedo C, Lopez-Soto A, et al. Dying in hospital of terminal heart failure or severe dementia: The circumstances associated with death and the opinions of caregivers. Palliat Med 2007;21(1):35-40.
17. Thom T, Haase N, Rosamond W, et al; American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Heart disease and stroke statistics–2006 Update. A report from the American Heart Association Statistics Committee and the Stroke Statistics Subcommittee. Circulation 2006;113:e85-e151.
