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Most Wait Too Long to Engage Hospice Services

Comfort Keepers In-Home Care in Reading, Pennsylvania.

By Wendy Kerschner on Reading Eagle [Nov 8, 2020]

When most people hear the word “hospice” they think someone has days to live. They might be right, but they might be wrong. One of the reasons the general public associates the word “hospice” with a short life span is because most patients and their families wait too long to engage services.

According to Bayada Hospice, “Studies show that half of patients spend less than three weeks on hospice.” With that fact in mind, it’s easy to understand how some might view hospice as a short-term service. The truth is that if services are started earlier, families would benefit from the support longer.

Hospice is a service offered to patients who, according to their doctor, have a life expectancy of six months or less. For those on Medicare, hospice is a benefit that is provided at no charge. For those not yet Medicare-eligible, most health insurance companies will cover the cost of providing hospice care, although there may be a co-pay or deductible.

Hospice services are provided to a patient wherever they consider home, including a personal care facility or skilled nursing home, or in some cases, the hospital. Hospice covers the cost of items related to the care of the patient such as medications, supplies (adult protective briefs, incontinence bed pads) and equipment (hospital bed, oxygen).

A nurse visits once or more per week, based on the current need of the patient, and a home health aide typically visits multiple times per week for bathing assistance. The care of this interdisciplinary team is included, at no charge, with hospice services.

The time to explore hospice services starts when someone is diagnosed with a terminal illness and is no longer seeking curative treatment. Terminal illness could include congestive heart failure, Parkinson’s disease, Alzheimer’s, cancer and various other advanced diseases.

Additional indicators that hospice may be appropriate is when someone has frequent hospitalizations in a six month time span, has an unexplained loss of appetite and thus unintentional weight loss, sleeps excessively throughout the day with no interest in activities, generalized weakness, unexplained or poorly managed pain and/or difficulty breathing even at rest.

Most end-of-life journeys follow a long, slow decline. Noticing the signs of decline and having the conversation about care and support early in the process is key to engaging hospice sooner rather than later. When signs are noticed, contact the patient’s primary care physician for a hospice referral. Once a physician writes an order for hospice, a representative from your chosen hospice company will visit the patient to confirm hospice eligibility.

Many families struggle to provide the support that an end-of-life family member requires. Hospice eases that burden by providing medical assistance, advice, comfort measures and bathing services. Family members are often relieved knowing they have access to a hospice professional at any time to discuss medical questions and health status. Emotional support is also offered to family members including on-going grief counseling.

Hospice care focuses on providing quality of life and peace of mind at a most sensitive and delicate time.

A friend of mine whose mother had the support of hospice services in a facility during the pandemic said: “Hospice kept our family informed. The nurse was caring and it provided peace of mind to know that someone else was there to help my mom.”

Local Bayada Hospice representative, Allison Heller, confirms: “The idea of hospice sometimes carries a negative stigma and misconceptions that cause people to start hospice care too late. The sooner a patient begins hospice, the sooner the team can develop a personalized care plan. On more than one occasion, families have said we should have started hospice sooner.”

For more information on choosing a hospice provider and understanding hospice services and benefits, visit CaringInfo, a program of the National Hospice and Palliative Care Organization, provides free resources to help people make decisions about end-of-life care and services before a crisis.