Heart failure, the only major cardiovascular disease that’s growing in prevalence, affects many older adults. Five million U.S. residents live with heart failure; half of them are at least 75 years old.
Living with such a serious disease—let alone the multiple chronic conditions experienced by many older adults—drastically impacts a person’s quality of life. Common heart failure symptoms include shortness of breath, fatigue, edema, persistent coughing and confusion. (Our summer 2014 issue covered cognitive impairment among individuals with heart failure and the implications for care.)
That’s why University of Wisconsin–Madison School of Nursing Clinical Associate Professor Beth Fahlberg, PhD, RN, AGPCNP-BC focuses on how nurses can provide palliative care to improve the quality of life for older adults with heart failure and to support their families.
Palliative care providers work with patients to manage symptoms and reduce pain and stress, leading to an improved quality of life. Hospice care is provided by an interdisciplinary team towards the end of life, with a focus on maximizing the quality of their remaining time.
A 2011 article Fahlberg co-authored for the American Association of Heart Failure Nurses notes that many individuals with heart failure experience uncontrolled symptoms, including pain and depression.
Distressing symptoms can occur regardless of the severity of the disease, so “supportive and palliative approaches to care are recognized as appropriate at all phases” of heart failure, the article states. “As many treatments and devices decrease the risk of sudden death, individuals live for longer periods with high symptom burden and uncertainty of prognosis,” increasing the need for palliative care.
Signs that individuals with advanced heart failure may benefit from palliative care include a poor understanding of their prognosis or treatment options, distressing symptoms, and poorly identified goals of care. Signs that they may benefit from hospice care include an increasing frequency of emergency room visits or hospitalizations, recurrent or intractable infections, and a progressive decline in functional status.
Nurses can support individuals with heart failure by discussing palliative and hospice care options with fellow clinicians. In a chapter she co-authored with Erin Donaho, RN, MSN, ANP-C, Shreda Pairé, RN, MS, FNP-C, ACHPN, and Nora Brennan, RN, BSN, CHFN, Fahlberg suggests the following questions to guide these discussions:
- Would it surprise you if your patient died in the next six months?
- Do you think your patient would want to be readmitted?
- Have you had a discussion with the patient or family about palliative or hospice care?
- May I discuss palliative or hospice care or psychosocial needs with the patient and family?
- What are their preferences and goals of care? Are these realistic?
- Would it be beneficial to discuss the patient with the palliative care service?
Despite the documented benefits, it’s often not easy for individuals with heart failure to access palliative or hospice care. They—or their primary care provider—may fear that discussing these options may suggest that they’ve “given up.” Other potential barriers include cultural practices, spiritual beliefs and language differences.
The realities of heart failure may also make it difficult to access hospice care. The unpredictability of the disease’s trajectory complicates hospice referrals, since the trigger is usually a life expectancy of six months or less. Hospice care providers may exclude medications important to managing distressing heart failure symptoms, due to their cost or because they’re viewed as life-extending, rather than palliative, care.
Common implants for people with heart failure, such as cardioverter defibrillators or ventricular assist devices, have implications for palliative and hospice care. Palliative care addresses device complications, while hospice care facilitates difficult discussions about deactivating the devices’ life-saving features.
Many individuals with heart failure have complex approaches to palliative, hospice and end-of-life decisions, due to their previous medical experiences. Most “have lived with heart problems for many years, and have experienced numerous cardiac events, surgeries and procedures,” Fahlberg and co-authors point out in the American Association of Heart Failure Nurses article. “Many have already had their lives extended” with advanced procedures and devices.
By understanding and advocating for palliative and hospice care, nurses can help the growing number of older adults with heart failure better manage their physical symptoms and stress, and more fully enjoy their lives.
–Diane Farsetta