Leaving this life is not an option. You can, however, have a say in how you depart.
Early in my hospice career, in 1997, I visited a 90-year-old nursing home patient, whom we'll call Mary. Her roommate, Dorothy, was also 90. Both women were dying.
Mary received hospice services and was resting comfortably. The hospice staff had just come to her room to examine her and review medications. She was bathed, her hair shampooed, and had been given a soothing massage. Reclining on clean sheets, wearing a fresh gown and even a little makeup, Mary seemed deeply relaxed.
In contrast, Dorothy appeared agitated. Groaning, she gripped the side rails of her bed. She was bloated, struggled to breathe, and was tethered to a feeding tube and an intravenous needle that delivered fluids and medications. Dorothy was unable to speak, but the panic in her eyes clearly implored, "Please, help me!"
When I asked a nurse if Dorothy's family was aware of hospice services, she shook her head. "Her doctor doesn't believe in hospice."
The images of these two women at the end of their lives have stayed with me. Over the years, I've had the privilege to work with patients like Mary and their loved ones. And, I've encountered too many like Dorothy, who could have benefited from hospice care, but did not, because they were not able to express their wishes and had never made them known to their loved ones.
An excellent death as the capstone to a life well lived requires some forethought and planning. But what if a patient is unresponsive and has not previously expressed or documented his/her wishes? The "15-Minute Test" is a helpful guide for those who have to make end-of-life decisions on behalf of their loved ones.
The essence of the 15-Minute Test is this: If an unresponsive, dying patient could, just for 15 minutes, sit up in bed and express her wishes, what would she say? Knowing the loved one's values, beliefs, and how he lived his life, how would he want to be treated in the final, end-of-life transition? With no reasonable hope of recovery, how would the patient want to be treated?
The 15-Minute Test can trigger a paradigm shift. Instead of focusing on what they want, the family and loved ones see things from the patient's perspective so they can provide the appropriate care.
For patients with life-limiting illnesses, hospice takes a holistic approach to care by addressing the physical, emotional, and spiritual needs of patients and their loved ones. Hospice treats the patient, not the illness; the focus is on care, not cure. Hospice staff care for patients in the home, the hospital, nursing homes, assisted and independent living facilities and hospice inpatient and residential facilities.
Patients with any end-stage disease may be eligible for hospice services. Hospice care is covered by Medicare, Medicaid, and most private insurance providers. A patient's primary physician may continue as the attending doctor throughout hospice care.
If you have questions, contact your local hospice for a free consultation and information. To locate a hospice near you, see www.nhpco.org/find-hospice. Hospice can make the unbearable seem bearable and bring hope to what seems like a hopeless situation.
What about having a say in your own end of life care? That means having "the conversation" today about a topic many people want to avoid -- their own mortality. But having that conversation will make it more likely that your end of life will be like Mary's -- and not Dorothy's.
Begin by making your wishes clear. Engage in conversations with your loved ones about your wishes, and complete an advance directive. An advance directive is a legal document, filled out in advance, that directs your loved ones about how you wish to be treated, if one day you cannot speak on your own behalf. MyDirectives.com offers a free and easy-to-use online advance directive including the ability to upload video messages, documents, photos, and music.
You plan for births, parties, graduations, weddings and vacations. If you want to plan for a good death, begin by gathering information ahead of time, determining and documenting your wants and needs, and discussing wishes with loved ones.
Just consider the "15 Minute Test" for yourself. If you were in Dorothy's position one day, wouldn't you rather be Mary?