Heart disease is responsible for one out of four deaths in the United States. That’s over 600,000 deaths per year. One might expect that if 25% of deaths are due to heart disease that heart disease would account for about 25% of hospice admissions. That’s not the case. In 2014, heart disease was listed as the primary hospice diagnosis in only 13.4% of patients. What’s happening here?
Certainly, there are some heart disease patients who, unfortunately, would never have the opportunity to consider hospice. An example might be a middle aged gentleman with previously undiagnosed coronary artery disease, who suddenly experiences a massive myocardial infarction and dies in the emergency room. But leaving aside the sudden or unexpected cardiovascular deaths, there are still a large number of people who aren’t being referred.
For much of heart disease, whether it’s ischemic, valvular, hypertensive, etc., the final common pathway is one of heart failure. And heart failure is characterized by remissions and exacerbations. Though there is an overall downhill trajectory of disease, that downhill course is punctuated by periods of decompensation from which, with good management, the patient is able to improve (though often not back to baseline). This sets up a pattern where both patient and physician believe – “we can get through the next one, too.” Neither has a crystal ball telling them for any one exacerbation whether this will be the final one. Because of this uncertainty, there may be delays in important discussions between doctor-patient and patient-family regarding prognosis, end-of-life wishes, resuscitation status, etc.
A heart failure exacerbation is frightening for patient and loved ones. Dyspnea is the primary symptom and when you can’t breathe, you want help now. Calling paramedics and getting help in the emergency room becomes a pattern. If that’s always been the way to get over an acute attack, it’s hard to imagine a different way to address those symptoms.
Where does this pattern lead? Unfortunately, this pattern leads to a lot of hospital deaths, often in intensive care units. Heart failure patients want an exacerbation treated quickly, but like most people, they do not want to die in a hospital. Most don’t want to die hooked up to machines.
Can hospice help these patients? When you think of the symptomatic treatments patients get during a heart failure exacerbation in the emergency room, it is mostly IV diuretics, IV morphine, and nebulizers. For heart failure patients, hospice can have these medications in the home where a hospice nurse can administer them in the home setting rather than calling paramedics and ending up in the hospital. More important, we find that with a hospice nurse visiting the home frequently, we have better disease management. Patients end up taking their medication as directed, monitoring weights, and adjusting diuretic therapy before a bad exacerbation. Once patients develop some confidence that symptoms can be managed well at home and have a plan in place, they call hospice when symptoms worsen, not 911.
It’s important to remember that hospice doesn’t limit itself to addressing dyspnea. Hospice will look carefully to identify anxiety, depression, pain, anorexia, cachexia, fatigue, constipation, etc. and work to minimize these symptoms as well. Sometimes, with better control of anxiety alone, heart failure patients have improved quality of life.
Sometimes, severe heart failure patients end up on IV inotropes in the hospital. Halifax Health - Hospice will allow patients to go home on many of these agents. We won’t actively titrate them as is done in a hospital setting, but we allow patients to remain on them at home until such time as there is further decline and patient or decision maker opts to stop them.
When should the hospice referral be considered with heart failure patients? The hospice benefit is designed for patients with a prognosis of six months or less. Understanding, that prognostication is an imperfect science, Medicare allows for an unlimited number of re-certifications as long as the physicians
continue to have reason to believe looking forward that death will come in six months if the disease follows its expected course.
Below are some factors to consider. Remember, also, that hospice might be appropriate for even less severe heart disease if there are other co-morbidities contributing to the patient’s trajectory of decline.
- Shortness of breath at rest while on oxygen and receiving optimal medical management
- Ejection fraction of 20% or less
- Multiple emergency room visits/hospitalizations or increasing frequency
- A heart failure admission requiring mechanical ventilation
- Inability to preserve renal function, adequate blood pressure, or safe electrolytes when treating congestive symptoms
- Removal from a transplant list
- Rapid decline in functional status
- Heart failure accompanying advanced age
- Progressively worsening angina
- Dangerous dysrhythmias with refusal of pacemaker or in spite of pacemaker
- Patient wish to avoid emergency room and hospital
If you have a heart disease patient that might benefit from hospice services, please feel free to call Halifax Health - Hospice. Our team will be happy to speak to patient and family and explain the services. Even if there is a decision not to use our services at the time, they will be aware of what we can offer and know who to call when they are ready.