This Has Nothing To Do with Throwing in the Towel
A difficult aspect of hospice care is recognizing when to begin. Perhaps the biggest obstacle is realizing that hospice care has nothing to do with “throwing in the towel.” Simply put, hospice is not the end of life, but rather the beginning of a style of care that is appropriate to the situation.
It’s true that insurance definitions of hospice include a six-month prognosis of a terminal condition. Yet, in many cases, people get better and return to other forms of care or have to extend their six-month outlook. The purpose of making this point is not to paint false hope, but to open wider the possibilities of comfort, learning, and framing the outlook of the patient and the family.
Most important, a timely transition to hospice care can improve quality of life, even and especially when we are faced with difficult news.
The Best Time to Talk is Before
Just as “the time to make friends is before you need them,” the most productive time to have a family conversation about how we prefer to navigate the last chapters of life is before we are facing them. It may not be an easy conversation to start. In fact, people have the tendency to put off this talk. That postponement can continue right up to the day when decisions cannot be put off any longer and care is needed.
Families can overcome this hesitation. Good chances to begin the dialogue come along frequently – if only we can recognize them. The funeral or life celebration of a friend or loved one can be the seamless backdrop for beginning to talk without alarm about one’s own preferences for care when life begins drawing to a close.
And these openings include happy times, too. Family reunions, holidays, or any time we are together can be an opportunity. Talking about the lives of those who came before us – as we do sometimes in these gatherings – can be a good time to begin.
Later Can Be Good, Too
But if the prospect of a terminal diagnosis comes before we’ve had the opportunity to discuss our preferences of care, then it is never too late to talk about it. The urgency of this decision can prompt a discussion, but it will be important to understand the hesitance felt by everyone involved.
For the patient, everything we’ve learned about persistence and tenacity in life may stand in the way of accepting the diagnosis we have been given. The truth is clouded by ideas like “fighting for life,” or “beating this.” These perceptions can be admirable and even beneficial sometimes, but too often they cause more suffering not only for the patient but also for families and loved ones.
For the family, acceptance may be easier or harder, but it certainly will be complicated. Life events and history come forward, and the roles we took as children in the family can be difficult to overcome when it comes to advising and decision-making.
For the attending physician, the recognition that it is time for hospice may not be as clear-cut as it sounds. Even with thorough medical knowledge and compassionate intent, doctors, too, might see hospice as a form of “giving up.”
Knowing these different perspectives can help us better understand and move forward with a discussion despite all this natural hesitation.
Resources for Support and Understanding
Because CoxHealth at Home is experienced in the broadest range of needs – not just hospice – our perspectives on how to discuss hospice and when to consider it can be very helpful and bring greater comfort.