The hospice decision – whether or not to cease life-prolonging measures and switch to comfort care at the end of life – can be one of the toughest to navigate if one is not prepared. Unfortunately there are a few misconceptions about hospice that can lead to unnecessary costs, and more importantly, prolonged discomfort or suffering.
Misconception #1: Hospice is for the very, very end of life.
When I told a friend that an elderly relative had been placed under hospice care, she said, “So she only has a week to live?”
“No,” I said, “What makes you think that?”
“Well, I thought that was who they called when you only had a week or so to live.”
“Not true,” I replied.
Having served on the speaker’s bureau for my local hospice a long time ago, I had forgotten how many misconceptions there are about it.
The eligibility requirement is actually a prognosis of 6 months or less, assuming the patient’s terminal illness runs its normal course. [See: https://www.nhpco.org/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf]
Some people live longer than 6 months, and therefore are cared for by hospice for even longer.
Misconception #2: Hospice is not the patient’s choice.
When my friend said “they” call hospice, she thought, as with other medical services, that the medical team would “know the right time” and do the calling. But studies show medical teams are more likely to try heroic measures for longer than necessary before having a hospice conversation.
They aren’t to blame – they want the same thing the patient and their family want – for the patient to live longer. In fact, unless instructed differently with a Do Not Resuscitate (DNR) or Do Not Hospitalize (DNH) order, [See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5507729/] they are legally required to do everything in their power to prolong quantity of life.
Yet, how to live the end of life is as much a patient and family decision as a physician one. It’s up to patients and their families to proactively ask about prognosis for quality of life, not just quantity, with and without hospice. Even better, when patients and families specifically address detailed but difficult questions in advance, everyone involved has clear direction to accomplish the best end of life possible. Such questions can be found in a document like Five Wishes [Link: Five Wishes].
Misconception #3: The more money spent at the end of life, the better it will go.
Actually, it’s the opposite. As reported by Forbes.com, “It seems that no matter how much money you use during that last year/month, if the person is sick enough, the effort makes things worse. A lot of the money being spent is not only not helping, it is making that patient endure more bad experiences on a daily basis. The patient’s quality of life is being sacrificed by increasing the cost of death.”
Hospice’s primary goals are alleviation of suffering and promotion of informed patient and family choices. Neither of those cost as much as heroic treatments and surgeries.
Misconception #4: Accepting hospice care means giving up.
Anita Brikman, senior vice president of strategic communications for the National Hospice and Palliative Care Organization, says, “One of the most common misconceptions about hospice and advance care planning is that accepting one’s mortality means ‘giving up’ and that is not the case. Hope can be found throughout the experience of serious and terminal illness.”
Misconception #5: Hospice is expensive.
Hospice is sometimes confused with long-term care costs. In fact, upon qualification for hospice, Medicare steps in and covers many costs of long-term care, including residential costs and home care.
If you have a friend, client, colleague, or family member struggling with an advanced terminal illness, get informed now, not later. Learn more about hospice care at www.nhpco.org, and/or start by reading Being Mortal, by Atul Gawande, M.D. [Link: http://atulgawande.com/book/being-mortal/]
Consider calling Hospice sooner rather than later. Not only can Hospice save money, more importantly, at one of life’s most difficult times, it can save everyone’s sanity.