I may still be on maternity leave, but I had a taste of “work” this week as I connected with some colleagues. Someone very special to me was faced with making difficult decisions on behalf of her dad, who is terminally ill and no longer eligible for chemotherapy. We spoke at length about hospice care, which tends to carry a certain stigma; I explained that it in no way signifies giving up on your loved one, nor does it mean they’re expected to die tomorrow. Hospice is an incredible benefit (paid for by medicare) with the goal being to improve one’s level of comfort as they navigate through end of life, focusing on the quality of the time they have left (vs quantity). It even covers supplies like incontinence products, hospital beds, and medications, if necessary, as well as visits from clergy members and grief counseling for families once someone has passed.
In order to qualify for hospice services, an individual must have a terminal diagnosis that they are no longer seeking treatment for (i.e., cancer without chemo). That’s not to say the symptoms aren’t treated – they’re the main focus! It’s the disease itself that is no longer being treated. A doctor must also certify that they feel the person has less than six months left to live. As we know, no one (earth-side, at least) can predict with absolute certainty how much time someone has left; this is truly an estimate, if not even a formality. I have known many people who have been on hospice for years!
Once evaluated, hospice determines what they feel an individual needs in terms of services. Some have round-the-clock “continuous care”, whereas others are visited once a week – it really varies and is person-centered. My dear friend’s father, for instance, will be visited by his aid biweekly, which for him is plenty. His pain will be monitored and managed closely, with hospitalization avoided whenever possible.
Despite its incredible services, its stigma persists; my friend is adamant that her dad not know he’s on hospice. He would be devastated and give up, she explains. He would lose hope. This would be the beginning of the end for him, they feel. Her mom is different, she says – she would absolutely want to know, as there are things she’d want to do.. people she’d want to talk to.
Working in senior living/healthcare, I’ve learned it’s so not uncommon to feel the way my friend’s father does. Hospice nurses and caregivers are used to being rather discrete and, of course, remaining positive. As the saying goes, ignorance is bliss. But lately I’ve been thinking.. would I want to know? What loose ends would I need tied up? What am I putting off? As I’ve also learned working in the field; don’t wait until it’s too late.