Each year, close to 2 million people access hospice care in the United States. The decision to begin hospice revolves around thoughtful conversations with the patient, their loved ones, and their primary care physician. It is not an easy decision, but knowing the facts and gathering necessary information can ease the process for patients and families.
Common misconceptions may include the idea that hospice is giving up and only about medication, or that it is just for the last few days of life and solely for the patient themselves. Below, NVNA and Hospice’s Hospice Clinical Manager Amanda Pedretti, RN, CHPN, EOLD, speaks to some of these beliefs.
Misconception: Hospice Is Giving Up
Hospice is about honoring a patient’s dignity and quality of life, providing comfort and support to manage symptoms, and allowing for meaningful time to be spent with friends and family. Care can be administered in a variety of locations, including private residences, nursing homes, assisted living facilities, or at hospice homes like the Pat Roche Hospice Home. It is a choice to elect hospice, and that choice can be changed at any time.
Hospice offers a renewed sense of hope and peace, presenting a shift in the goals of care. The pursuit of quantity of life becomes one of quality, neither hastening nor postponing death. Patients’ lives are respected as they are treated with dignity and in a way that aligns with their personal objectives.
Misconception: Hospice Is About Medication
Hospice is a holistic, life-affirming approach to care which incorporates an interdisciplinary team of nurses, aides, chaplains, social workers, and volunteers. Not all end-of-life symptoms are physical ones: some are spiritual and psychosocial. Medication is just one aspect of what is provided to address these symptoms.
With hospice, patients no longer receive curative care. If residing at a private home, hospice visits take place intermittently based upon each patient’s individual circumstances and needs, while hospice homes can provide the option of 24-hour care. Nurses provide medication solely for pain and symptom control to allow for comfort; meanwhile, patients receive emotional support, spiritual care, and companionship from the rest of their team to ensure all their needs are met.
Misconception: Hospice Is Only for a Patient’s Final Few Days
Hospice care is intended for anyone with a life-limiting illness who is likely to have six months or less to live if there are no interventions planned in terms of curative or treatment measures. A patient may exceed this expectancy and still receive hospice services.
Patients and families often express that they wish they had begun utilizing hospice weeks earlier due to the opportunities for acceptance, resolution, and making the most of every day as it comes.
Misconception: Hospice Is Just for the Patient
Caring for families both before and after a loved one dies is a key part of the hospice experience. Family members are always included in the decision-making process and upheld throughout the hospice journey.
Families tend to be busy immediately after a loved one passes away, with energy put towards finalizing plans and settling estates. After time, however, life becomes quiet and the loss sets in. Family caretakers must reaffirm their “old” identities. With the benefit of hospice, grieving families have a bereavement support system available for 13 months following a loved one’s death to provide guidance when they don’t know where to turn.
It is essential to know the difference hospice care can make and to not be afraid of the concept, should it arise. Amidst stress and grief, the hospice experience can provide tremendous comfort to patients and their families as they face the final stage of life.