Say the word hospice and the response will often be, "Isn't that where people go to die?" This oversimplification is understandable. Hospice is a primarily home-based program focused on caring for individuals who are facing a terminal illness. But talk to any family who has experienced hospice support and they will insist it is so much more. In reality, it is a team of individuals -- physicians, nurses, social workers and spiritual counselors -- all working together to meet the client's physical, emotional and spiritual needs.
Over 90% of our country wishes to die in the comforts their home, yet 60% of deaths in 2010 were in a hospital, 25% of these patients being individuals over the age of 85. Somewhere along the continuum of care, our system has defaulted to traumatizing CPR, life-support and death in a hospital wing, often times without educating the family of their alternative options. With advanced technology able to sustain patients at the cost of their quality of life and spirit, it begs the question: at what point does fighting for a life turn into hurting the exact being you are trying to save?
Kim Arakawa's father was diagnosed with chronic obstructive pulmonary disease (COPD), and within months his health declined rapidly and he was rushed to the Hilo Medical Center. In the emergency room, the physician informed Kim that her frail father had suffered a heart attack and needed to be flown to Maui for additional tests.
Having been closely involved with hospice care, Kim knew the benefits of focusing on quality of life as opposed to subjecting her father to the physical and emotional consequences of aggressive treatment. She mustered the courage to ask if it was time to look into hospice. The physician insisted it wasn't necessary.
Upon arrival at Maui Memorial Medical Center, Kim's father was placed in the ICU. With the proper tests done it was clear to the doctors what Kim already knew in her heart, her father was not strong enough to undergo any life saving procedure. Trapped in a foreign environment, surrounded by strangers and machines, Kim's father began hallucinating. Physicians predicted her father would not likely live through the evening. Adding insult to injury, Kim was also informed the insurance which had allowed her father to be flown on a specialized medical flight to Maui would not assist with transporting him back to Hilo.
Kim was forced to take her father's health care into her own hands. In a moment of lucidity, Kim explained the options to her father and asked what he wanted to do. With tears in his eyes, he said, "I want to go home." Kim called Hospice of Hilo where they immediately prepared a room for him at their Pohai Malama a Harry and Jeanette Weinberg Care Center. She then pulled together what savings she had and made arrangements to bring her father back to Hilo.
Within Pohai Malama, instead of dying the same day as physicians had predicted, Kim's father lived another week. In that time, he shared loving words with his family, expressed his fear and anxiety of leaving this world to a spiritual counselor, was visited by loved ones, enjoyed listening to the birds outside his window and indulged in ice cream and jello to his heart's content. "He said he felt like a King," said Kim. On the afternoon he passed away, Kim laid next to her father and whispered, "It's okay, Dad. We love you and will miss you. But we'll be okay," until he took his last breath.
How different would the ending of this story be if Kim had not called upon Hospice of Hilo for help? How scared would her father have been, attached to machines in the hospital? What regrets would Kim have if she was unable to exchange words of love with her father? Kim continues to wonder, "Why wasn't the physician in the emergency room more willing to consider hospice?"
These are the challenges families face more often than they should. Nationally, 60% of qualified patients receive hospice care, yet in Hawai`i, only 32% access this resource. The average amount of days patients in our state access hospice care, which is directly correlated with families' satisfaction with services, is also lower than the national average -- 70 to 63.
A study by Icahn School of Medicine at Mt. Sinai found that hospice care can greatly improve the quality of life for both patients and their loved ones. Numerous studies have also shown that patients who accept hospice services live longer than others with the same prognosis that do not. And with the entire cost of home hospice care covered by Medicare, Medicaid and majority of private insurance companies, it is a resource that is as impactful as it is economical.
Our patients and families deserve to understand their options. Somehow our health care providers and hospice organizations need to come together to bridge this divide.
Because no, hospice is not a place to die. It is honoring your wish to live better.