The Number One Thing Family Members Should Know About Hospice Care

As a hospice social worker, I have noticed that there are a lot of misconceptions about hospice care in the USA. I truly believe that the misunderstanding stems from the fact that we are a death denial society. Many people feel uncomfortable talking about death and end of life care. A person qualifies for hospice care when they have been diagnosed with a medical condition that a doctor predicts will end the person’s life in six months or less. Of course, this is a “prediction”, no one knows the hour or day and I have personally known of hospice patients that have been on care for up to a year. I have also seen some hospice patients “graduate” from hospice (their condition improves and they no longer medically qualify for hospice). Of course, graduating from hospice and being on hospice for over a year are the exception and not the norm.

The Benefits of Hospice Care

Hospice is probably one of the most underutilized services. There are many benefits to starting hospice care sooner rather than later. Hospice is 100% covered by Medicare. There are many services provided with hospice care including medicine, nursing, chaplaincy, and social work. Medical equipment such as a hospital bed, wheelchair, walker, oxygen, shower chair and bedside commode are also included. Some consumable products covered are nutritional drinks, adult diapers/briefs, wipes, and pads. The services included in hospice care are a great value to many families. The hospice patient has the benefit of not having to go to doctor’s appointments, they can relax in the home as nursing comes to them to provide comfort care.

Your Role in Hospice Care

The number one misunderstanding that I have seen in working in hospice is that many people believe hospice provides nursing and professional caregivers 24/7. This would be true if a patient medically qualifies for a hospice house (inpatient care). Most hospice patients do NOT medically qualify for a hospice house. Most of the hospice care in the USA is provided in the patient’s home. The number one thing that family members should know about home hospice care is that the primary caregivers are family members, not hospice nurses or aides. Medicare does not cover paid caregivers in hospice care. This means that family members take on the daily tasks of feeding, administering medication, hygiene, and safety of the hospice patient. Some families will pay for paid caregivers, but most can not afford to. Some patients might go into a skilled nursing facility, but this option is very costly and there is no Medicare coverage for this. There is a lack of financial resources for family caregivers to access as end-of-life care is grossly underfunded. Typically, the primary caregiver is often the patient’s spouse. Not only is the spouse grieving their loved one’s terminal diagnosis, but they are also thrown into the role of caregiver learning to administer hospice meds, empty catheters, and provide hygiene care. The patient’s children sometimes assist with care, but this can be a hardship when they do not live close or are employed fulltime as many do not have the financial resources to stop working. As a hospice social worker, I have seen this struggle firsthand. Unfortunately, there is not a simple solution.

Therapy Can Help You Mange the Stress of Daily Caregiving

If you are feeling overwhelmed by caregiving responsibilities, please reach out. Short term therapy can be beneficial to allow you to mentally function at your best by assisting you with coping skills, setting realistic goals, prioritizing daily tasks, and managing your daily stress. Blackbird Therapy offers convenient hours for busy people. In person sessions are available in the Kansas City Metro and telehealth sessions are available anywhere in the state of Kansas.