By Elizabeth Guttenberg, LCSW, Senior Care Advisor
As you know, if you’ve been reading my newsletters for a while, my mother and I cared for my father for a number of years after he was diagnosed with ALS at age 57. ALS is a neurodegenerative illness, and it is terminal. Lucky for us, we had a lot of supportive friends and a few wonderful caregivers to help us navigate the many challenges we faced—but towards the end of his life, we needed more. So as a family, we made the tough decision to turn to hospice care.
As a Senior Care Advisor I work with many families facing issues related to end-of-life, and many, like mine, struggle with the decision about whether to initiate hospice services. The most common worry: that accepting hospice care is like giving up or signing a death warrant. However, as we discovered—and as I can now say from a professional perspective—hospice care is a supportive, efficient, and often underutilized way to provide top notch managed care for a loved one. In fact, many families I’ve worked with tell me that they wish they had taken advantage of it sooner. So if you are deciding whether to implement hospice care—either now or in the future—knowing the who, what, when, and where of how it works may be helpful.
Who: A hospice team typically includes a doctor, nurse, social worker, chaplain, certified nursing assistant, home health aides and additional visiting resources, such as volunteers, and music or pet therapy. Family members also receive access to grief and bereavement counseling and support groups in the year following a loved one’s passing.
What: Hospice offers comprehensive, holistic care to individuals with terminal illness. The goal of hospice is to offer palliative medical care (i.e. pain management), along with compassionate emotional and spiritual support, to both hospice recipients and their family members. My mother and I can attest that our hospice social worker was an invaluable source of information and comfort to my father and us.
When: Individuals can enroll in hospice if they have a life expectancy of six months or less and are not taking drugs or treatments intended to cure their condition. However, this does not mean that they will get booted out of hospice care if they live beyond six months. The last phase of life can take unexpected twists and turns, and hospice understands and accepts that.
Where: Hospice services can be provided at home, in a hospice care center, or in a nursing home. Hospice care providers can authorize and supply palliative medicine as well as medical supplies to ensure in-home comfort for both the recipient and his or her caregivers—including a hospital bed, walker, wheelchair, incontinence supplies, and so forth. This “one stop shopping” is one of hospice’s greatest advantages for caregivers and family members.
How: Typically, a physician or nurse will be the one to make a hospice referral, but you or anyone else can do so as well. Hospice care is covered under Medicare Part A and many private insurance plans. Though, keep in mind that in-home hospice care is not provided on an around-the-clock basis, and the cost of room and board at a nursing home or hospice care center is not covered by Medicare. In some instances, Medicaid or long-term care insurance may cover this expense.
If you are trying to decide whether hospice care is right for your loved one, then I encourage you to get in touch with a Care.com Senior Care Advisor. We can assist you with sorting through the various challenges around making this difficult decision. And we can research and identify quality hospice providers anywhere around the country. Remember: we’ve been there, we get it, and we want to help.
Contact a Senior Care Advisor at Care.com. We are master’s-level social workers specializing in adult and senior care.
Call us today at (855) 781-1303 x3 or email questions to firstname.lastname@example.org