A Quick Review of Important Considerations on the Hospice Benefit
Your core support team is key - Hospice provides access to support 24/7 by phone, though only offer periodic nursing visits (in-home nursing care is not available through any avenue in our healthcare system, and is not covered by insurance). Your nurse case manager will be your primary point of contact, and the most important person to really trust and get along with. Your social worker is your advocate throughout the journey, helping to ensure you have everything in place as needed and providing emotional and psychological guidance along the way. The nurse and social worker are also both your educators around the journey and the options available to you through their care, as well as outside resources. The spiritual counselor will meet you wherever you are with understanding and acceptance, no matter their personal affiliation or yours (including atheism). The home health aide comes several times a week, and provides both personal hygiene and ongoing connection. They are not clinical, but often develop one of the closest relationships because of the higher frequency of visits.
Physician engagement is minimal and impersonal - The physician will very likely not be personally engaged in your care. Following referral and admission to hospice, a doctor or nurse practitioner will visit you to verify that you qualify. That’s typically the only time you see a provider at that level. The medical directors (physicians) meet with the rest of the team on a weekly or bi-weekly basis to review each case and confirm orders, but they don’t make house calls and they aren’t available to you or your family to address questions and concerns about your care.
Insurance benefits and access to care - Once you engage hospice, all insurance benefits are directed to hospice care, so you effectively forfeit relationships with current physicians and most (though not all) treatments. This means that everything you get through hospice is covered, including supplies and equipment you might need to stay safe and comfortable at home. It also includes coverage of standard comfort medications, but limits access to medications prescribed to treat your primary diagnosis. Hospices don’t typically offer supportive therapies like physical therapy to maintain strength or balance, or occupational therapy to support adaptive needs as your body changes, though they do offer some alternative therapies to support your quality of life, like music therapy and massage therapy.
What about my family - Unfortunately, hospice does not offer a lot of additional support for the family, so ensuring that your loved ones have a strong support network or additional providers involved in their self-care and grief journeys is an important piece of the puzzle. Caregiver burnout and complex bereavement are serious public health issues that remain largely unaddressed by the healthcare system. Getting the right support to help you and your loved ones understand what your needs and rights are is a crucial missing piece of end of life care in this society.