The Hard Art of Dying
How hospice can help.
by Siri Dharma
Editor's note: Oct. 12 is World Hospice and Palliative Care Day, and November is National Hospice/Palliative Care Month.
How do you start the conversation? The conversation about death… and dying. Because it can't be avoided: I will die, you will die, all of us will come face to face with death at some point in our lives.
I've been trying for a couple of years to talk to my children about my eventual demise and they will have none of it. Their response is, "We had a hard enough time losing our dad; we are not ready to lose you." I don't want to have an argument. But I am ready to talk about it, plan for it, and be prepared for it. I'm fortunate. I work in hospice and my work has afforded me an intimate view of death and the dying process.
Unfortunately, our society has developed very negative connotations about death; somehow it became "scary," not "sacred"; a "lost battle," not a "life well and fully lived." We're devoured by the "jaws of death" instead of "entering into the final sleep." The "Grim Reaper" takes us. We "lose" our life rather than having a "strong finish." It's time to deal with the fear, because death is natural, it's inevitable. It's OK.
And help is available.
Hospice is not a new idea. Centuries ago they were places of respite for travelers, wayfarer/care stations for the sick and injured. In the last 50 years there has been a resurgence of the idea and today hospice means "care of the dying."
As medical technology evolved, dying people were brought to hospitals where they were inundated with medical procedures to keep them alive until the last possible moment. Then they were put in an isolated corner of the hospital to die alone. The reliance on technology prevailed over the fact that people had been dying quite well in their homes for hundreds of years. Today, hospice takes dying back home, or to specific hospice facilities.
Hospice care focuses on a patient and his/her family's needs during the final months /weeks /days/hours and minutes of life — when care has shifted to comfort, rather than curative treatment. Hospice doesn't change the outcome; it simply works to normalize and ease the situation for the patient and family. Palliative care, or comfort care, is the methodology.
This "comfort care" is provided by an interdisciplinary team consisting of the patient's primary care provider, the team's medical director, registered nurses, licensed social workers, certified bereavement counselors, ordained chaplains, and trained volunteers. Certified nursing assistants (CNAs) and paid homemakers are also available to help the family. This team looks at each individual situation and decides on an appropriate "plan of care" that emphasizes managing any pain and discomfort, while creating an optimal (home) environment for care giving.
Hospice services are fully covered by Medicare, Medicaid and most insurance plans. I work with Gila Regional Medical Center (GRMC)'s Hospice Program, which serves Grant, Hidalgo, and parts of Catron counties. GRMC is a regional, non-profit, sole provider hospital striving to be "patient-centered" as opposed to simply disease-focused.
Doctors are trained to keep people alive at all cost — that being the operative phrase, "at all cost." The medical community was created to cure, fix and do everything possible to keep people alive. This can be a huge problem (and make dying very uncomfortable) when a disease process goes beyond the curing stage — and it does. I believe we have to learn how to look that fact in the face. Diseases can be cured; they can go into remission, and that's worth fighting for. But there comes a time for every single person on the planet when the end of one's life arrives, and this is where hospice is invaluable. Hospice offers a raft to meet the turbulence of that time.
All the services available via hospice help facilitate this time of life — a time when we must shift our thinking, move into a different place, open to another perspective, whatever it takes, to make peace with the inevitableness of leaving this Earth.
The hospice process is straightforward. When a referral comes to our office (and most often these come from family or friends), a hospice nurse will come to wherever the patient is to evaluate the situation. There are certain criteria in terms of disease diagnoses and so on that must be met. Then your doctor must certify that, if the disease follows its natural trajectory, you have approximately six months to live. (Because death rarely happens on cue, it has become common in hospice to see patients live longer.)
The entire hospice team deals with the psychological and social issues that can accompany the death process. Social workers help find resources; volunteers offer respite and companionship; chaplains are available to offer spiritual comfort. In my observation, and in the trainings I give, the care and concern for the caregivers is as necessary as managing the medications, or other medical aspects afflicting the patient.
There are still a lot of myths about hospice floating around — myths that need dispelling so that more families can avail themselves of these services when the time comes. One such myth is: Death is the worst thing that can happen. The truth? There are many things worse than death, such as alienation from those we love; physical, emotional and spiritual pain; abandonment by friends and family; the fear of being a burden and the fear of being helpless. Another myth is: My physician will let me know if my loved one is dying. The truth? Over 90% of physicians have opted, at one time or another, to NOT talk about dying to their patients AND over 50% of physicians never do. This means that the burden rests with you to learn what the end of life might look like and what options are available.
I hope you come to the conclusion that you and your family need to have this conversation — the conversation about how you want to die. Put your wishes down on paper — the plan can always be changed — sign, date and give a copy to your physician. If you don't let people know what you want at the end of your life, things may happen that you don't want.
Former Desert Exposure columnist Siri Dharma has lived in, and loved, Grant County for 15 years. For more information about GRMC Hospice Services, call (575) 574-4934.
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