"Do everything, Doc." That's typically what many family members say when a loved one is diagnosed with a terminal illness, and can no longer make health decisions independently. Even when they are told that any further interventions may be futile, they often still say "do everything". In many ways, that is an easy response --- it's the answer many family members think society wants them to say, and it seems "safe." It often is much harder to put limits on the amount of medical care a loved one receives. And I understand when family members say "I'm not ready to let go."
Death is never an easy topic to talk about, and yet we all want quality of life for ourselves and loved ones until it is our time to depart this world. And one of the most important lessons I've learned over the last 15 years has been the importance of hospice. To be honest, I never really knew that much about it until my mother had to make a decision about hospice for my father. It was only then that I learned the true value of this important service.
Even though hospice is more well-known today than it was a decade ago (with over 1.7 million patients currently in hospice), it is still vastly misunderstood.
So here at four things I wish more people knew about hospice care.
1. Hospice doesn't mean you've given up
Hospice provides comfort and quality of life to patients when there does not seem to be hope for medical cure or improvement. Hospice care is designed to reduce pain as well as minimize or at least control the symptoms of the disease. This hopefully enhances the quality of life for the patient as well as the family members. However, hospice does not hasten death, and it doesn't mean that you want a loved one to die. Some research even suggests that patients can live 29 to 60 days longer with hospice care. Instead of focusing on getting to medical appointments and going to procedures --- none of which likely impact mortality --- you can spend time just "being present" with loved ones. It is at this point where one learns to appreciate that time really is the most precious commodity, and focusing on quality of life is an important reset.
2. Hospice is not a place you go to die.
When we talk about hospice, it's not a place but a philosophy of care providing medical, emotional, and even spiritual care. And this philosophy can occur in many different locations. Too often people think you "go to hospice" instead of "enrolling in hospice care." I've been a witness to many deaths in a hospital setting where patients have been surrounded by loved ones. I often wonder if they knew they had a choice would they choose to allow their loved one to die at home. I was very fortunate that my father was surrounded by his family in the house he lived in and raised his children. It was incredibly moving to literally surround him and sing and pray during his final moments without the clanking of medical equipment or smell of hospital antiseptic. In many ways, I feel, and at least hope that he was aware of his surrounding and was comfortable, and not afraid. I recognize everyone won't have the ability and strength to witness death. Again it's not the location, but the type of care. Some patients and families will choose to die at home surrounded by their loved ones, while others will utilize hospice care in a skilled nursing or assisted living facility as well. Again, it's a philosophy not a specific location. And everyone should know they do have a choice.
3. Insurance covers hospice care.
Maybe I'm naïve, but I don't think money should be a factor when deciding care for loved ones. The last thing that should be on your mind during this crucial time is insurance and how it works. There are specific criteria to meet, but hospice care is covered by most medical insurances including Medicare. There are a variety of services covered ranging from medications to grief counseling. People often don't realize that you still have medical coverage, although hospice care does shift the focus from curing to comfort.
4. Hospice is not just for the elderly
Some of my patients still think hospice is only for those with cancer or AIDS or "incurable" diseases. In reality, only about one-third (37 percent) of people enrolled in hospice last year were cancer patients and less than one percent of the patients had HIV/AIDS. There are actually more non-cancer patients receiving hospice care. Some of the diagnoses for hospice included heart disease, stroke and kidney disease. And hospice isn't just for the elderly. As many as 15% of patients are between the age of 35 and 65.
Let's start thinking of hospice as a normal part of medical care. Hospice shouldn't be something to be afraid of or be considered substandard care. Instead, think of it as a way to provide continue to provide care, although different than what we traditionally may think, and a more comfortable transition during the natural progression of life.