House Calls: Treatment changes for disease’s end stage

Written by Trish Walker January 21, 2013 03:21 pm

House Calls runs every other Saturday. Today’s column is written by Trish Walker, a registered nurse with Sutter Coast Home Care. It is the final intallment of a four-part series about congestive heart failure.

As with most diseases, heart failure often gets worse over time, especially when you don’t participate in self care. The five-year survival rate is worse than for most common types of cancer.

Obtaining knowledge about the disease allows you and your family to know what to expect as the disease progresses. Planning for this eventual outcome of decline enables you to take control of certain aspects of your life, including making end of life decisions.

Most of us don’t want to have these conversations with our loved ones, but they are important. You need to be open and honest with your doctor, family, caregivers, health care personnel, and most of all yourself. It is imperative that you make end of life decisions while you are still able. This allows your loved ones to care for you without the added burden of making these decisions.

End stage heart failure has specific characteristics that doctors look for. They include multiple hospital admissions for exacerbations or kidney failure, maximum tolerated medications, worsening kidney function, and slow or no response to diuretics.

Patients will have unrelieved symptoms of shortness of breath, extreme fatigue, swelling that won’t resolve with diuretics, and the inability to exert any energy. As it worsens, both sudden cardiac death and multi-organ failure are common due to the prolonged deterioration of your heart and electrolyte imbalances.

Our goal for patients at this stage is to alleviate physical discomfort through prevention and treatment of symptoms, ensure quality of life, and support you and your family physically, emotionally and spiritually.

You and your doctor need to re-evaluate what treatments should be continued and discontinued. Many treatments no longer provide symptom relief, and because of this they should be stopped. This includes medications that only have long-term benefits, routine labs, and monitoring your blood pressure.

You should also talk to your doctor about turning off your implantable cardiac defibrillator, which does not delay the progression of heart failure and does not improve cardiac strength or function. When your heart is no longer able to pump and you have died, do you really want your ICD to continually shock you?  

Family and caregivers play an important roles. Spouses are the major source of support. Being a caregiver is often stressful and burdensome.  Most caregivers don’t want to ask their children or family for help because they feel they are too busy with their own lives.

Unfortunately, the caregiver is not only coping with the physical symptoms of their loved one’s HF, but they are also dealing with anxiety caused by the uncertainty of their own future, loss of control, and grief. Too often caregivers ignore their own health issues, and this can be problematic.

As health care professionals, and a society, we need to support these caregivers in a multitude of ways. They need knowledge in order to provide appropriate care to their loved ones, respite so that they can get rest themselves, help with household chores, and someone they can talk to who will listen. Ultimately, the patient will benefit from this.

The progression of heart failure is unpredictable, and no two patients’ experiences will be the same. You and your caregiver need knowledge in order to know when to seek treatment and when it is time to stop. The focus will shift to treating your pain, anxiety and shortness of breath. We will all face death at some time, but planning for it gives those you leave behind peace of mind that they followed your wishes, thus giving you control until the end.