Learning to Ask

This chapter is a bit of a Public Service Announcement so EVERYONE can read in its entirety:) If you learn something, please let me know and SHARE with others! Thank you for your support.

“My wife, she wants to know how we will coordinate her being admitted to the hospital … when the time comes,” Mr. Jain says. His voice wavers ever so slightly at the end before he straightens his shoulders and quietly clears his throat.

It is a late Monday afternoon. I am in the middle of my hematology clinic with only a few weeks remaining in my fellowship. After three years of specialty training, I am now treated like an independent practitioner. My patients are mine. The decisions, mine to offer. The conversations, mine to navigate.  From this empowered place, I begin taking a different approach to patient care. One that centers on being relentlessly curious.

Ravi Jain is standing in front of the exam table where his wife, Gupinda, lay resting. Her eyes, once warm brown, are now grey with the whites of her eyes tinted a pale yellow. Her skin is similarly sallow. The multi-colored silk headscarf covering her bare scalp is dotted with flowers and vines, appearing like a crown plucked from the orange blossoms that line the pathway to the clinic. With her feet extended, Gupinda's elongated emaciated body exaggerates the shape of her head. The roundness of her cheeks, the result of a chronic need for steroids, in combination with the absence of eyebrows, the result of chemotherapy, make her head appear more like a beach ball than the regal and angular countenance she possessed months earlier. The combination is arresting. A clear signpost of a life coming to an end. 

Ravi looks directly at me as he speaks. Even in the tiny exam room, he somehow manages to be alone, too far to lean against the wall for support and farther still to reach Gupinda's hands or feet. He does not look to his wife for affirmation.

"What do you mean 'When the time comes'?" I ask, looking first at Gupinda and then to Ravi.

Ravi clarifies without even a glance in his wife's direction, "We are hoping that when she becomes sicker, you have a protocol, a plan for how she can be directly admitted to the hospital just before she dies. She doesn't want to die at home."

Ravi appears so certain with his request. Six months earlier I might have simply taken him at his word. Now, after witnessing so many harms inflicted by assumptions, I am compelled to ask his wife directly. No euphemisms. 

"Mrs. Jain, have you thought about where you wish to die?"

Gupinda answers without hesitation. 

"I wish to die at home," she says, first looking at me, then turning her head to face her husband. Her voice is strong, while simultaneously gentle and enchanting, like the inexplicable strength of a butterfly balancing on a blossom caught in the wind. I watch as their eyes lock. Ravi seems barely able to breathe. His shock and humility are palpable as he softly says, "We clearly have things to discuss." 

Gupinda smiles as tears slide past her chin. She extends her hand, beckoning Ravi to come close.

Grateful for the permission my curiosity created for Ravi and Gupinda to speak more freely, I am satisfied with what I have facilitated. I don't know I have more to contribute. Instead, I contentedly leave them to "discuss" without providing them any additional options to discuss. Had I been educated on the hospice benefit, I could have recommended and arranged for hospice as the best support available to empower Ravi to honor Gupinda's desire to die at home.

                                                                      ****

I have unintentionally miseducated countless patients and families on the meaning of hospice. It is a place you go. Rarely. You can no longer receive medical care such as antibiotics for infections or blood transfusions for fatigue. Wrong. You have to sign a Do Not Resuscitate order. Wrong. You are given morphine to help you die quickly. Wrong.  

I didn't know that most hospice care in the United States is provided in the comfort of a person's home with family and friends bearing the responsibility for providing the bulk of direct care day and night. (Put more simply, hospice does not move in with you). That hospice care is actually provided by a team of specially trained professionals required to include a physician, a nurse, a social worker, a chaplain and a volunteer. That depending upon the company providing the care, the team may also include additional specialists such as art, physical, pet and massage therapists, to name just a few. That many different hospice providers exist to choose from, depending upon where you live, and in some rural areas, no providers may exist at all. That the hospice team must be available 24 hours a day, 7 days a week, including holidays. That medications and equipment are delivered directly to your home. That the hospice benefit is a benefit, meaning all of this care, equipment and medication is free and is intended to be provided for a minimum of six months. That to qualify for this benefit you need two doctors to state you have a prognosis of six months or less "should the illness run its natural course" and that what that actually means is that you don't have to die in six months. That a person receiving hospice care does not have to be or stay on their deathbed. That hospice is designed and intended to support each of us to live life fully through our final exhale. And that bereavement support is required to be available to loved ones for a minimum of 13 months. That no part of this is required knowledge for any medical student or resident. I didn't know any of this until I began practicing hospice medicine. Only then did I begin to realize a gap exists in medical education.