Heart Failure is typically a fatal condition. Unless a patient passes from another cause first, the syndrome known as Heart Failure will continue towards its inevitable, terminal conclusion.
Education of both patient and family about the expected or predicted course of this illness is necessary. Final treatment options, advanced care directives, and all necessary planning for this outcome must be discussed and completed before the individual becomes too ill to take part in the decision-making process.
Recently hospice services expanded to include those who are dying of Heart Failure. Initially, hospice care focused on those in the final stages of terminal cancer, but now care has expanded to include the relief of symptoms other than pain. Expanding care was a wise and caring decision, and hospice workers must be commended for the challenging task they accept. Family members of Heart Failure patients agree that it is not the pain that is the symptom most burdensome to the end-stage Heart Failure sufferer, but instead, the breathlessness. Therefore, compassionate care may require the frequent administration of intravenous diuretics, the use of supplemental oxygen, and in certain instances, the infusion of positive inotropic agents to supply symptom respite rather than the use of potent analgesics.
The time of diagnosis is when to begin the ongoing process of advanced care planning, including end-of-life care. Heart Failure is a dynamic, often swiftly changing process. Interactions with environmental influences (unseasonal heatwaves, a harsh allergy season, stress brought on by regional weather disasters, etc.) and routine public health patterns (e.g., flu season, grandkids bringing colds from school, norovirus at the senior center, etc.) can crash a hard-stabilized patient metabolism, bringing the possibility of circulatory or respiratory failure. Thinking early about what care decisions and life priorities are most important is essential for those living with Heart Failure. Remember, care goals can always be revisited, rethought, and rewritten as necessary and as desired. The most important piece is that there be goals for the end of treatment, and by this, we mean end-of-life care.
Goals of care are not simply a euphemism for “code status.” Goals of care include making decisions about specific treatment preferences, the depth or intensity of care provided during each stage of the disease process, as well as future care planning, e.g., what advanced care choices are preferred. Not all care goals are medically oriented. For example, how everyone wants to live their life and what they prioritize as wishing to do in their remaining span is overwhelmingly important. Are there people they want to see, relationships they want to mend, tasks they are driven to complete, events or special occasions significant to them? Making the determination of how your patient regards length of life versus quality of life lived and getting that down in the care plan is important for everyone involved.