I'm not a hospice nurse, just a DON in an assisted living facility as well as a consultant to one of our sister communities; and IMO the best time to have "the talk"about end-of-life issues is ten years before you think you'll need help.
While that may be an unrealistic goal for most people, it's nothing short of negligence for healthcare professionals to ignore EOL issues and avoid discussing them with our patients just because we're
uncomfortable with the topic. We see death and dying every day; why are so many of us so reluctant to bring it up when a patient is obviously declining and s/he says, "I'm done"?
When a resident says to me, "I'm tired of going to the hospital, I'm tired of hurting, I just want to be in an easier place".......that's when I call everybody in and lay the cards on the table. No one wants
to hear that their loved one is preparing to leave this earth, but hospice isn't only for people who are literally on their deathbed. It's for those who value quality of life over quantity, and who want to die in their own way, on their own terms.
It makes me sad when I see people who could benefit so much from hospice services wait until it's almost too late. In fact, many patients and families miss out on the very best hospice has to offer because they wait until the last week or two of life when symptoms are out of control, pressure ulcers are forming, pain and anxiety are interfering with ADLs, and spiritual distress is overwhelming them.
I know that popular misconceptions about hospice are hard to dispel; almost everybody who comes to me for advice on the subject tells me "well, I thought hospice meant you couldn't get antibiotics for a UTI or a blood transfusion if you need one" or "that's just for people who have six months or less to live". Although the PCP has to certify the probability that the resident/patient is within 6 months of death, I've had residents in my facility who were on service for TWO YEARS before they finally passed; in the meantime, there was nutritional guidance, personal care, volunteers to spend some time with when they needed companionship, medication and symptom control, wound care, family support, visits from a chaplain, medical equipment that was continually updated as their condition deteriorated.......basically, everything they needed for a comfortable passage into the next dimension.
What healthcare professionals must understand---and make their own---is the realization that the human mortality rate is 100%. Our bodies wear out, our cells cannot replace themselves quickly enough, and we die.....few people question that. It's HOW we die that seems to be the most difficult part of the discussion to process.
Why is that? And how do we get past it so we can help our patients face this final transition with self-determination, dignity and grace?
It's a lot of food for thought.......in the meantime, let's try to keep the dialogue going, shall we?