Monday, February 8, 2016
by Amy Getter
In the recent JAMA article "What would mom want?" I was saddened to read that the family was so shocked at the burden of caring for a dying family member. Since medical technology has removed the expectation of dying in the home in recent years, many people have not learned about caring for loved ones from prior generations (my own mother’s mother died in the hospital, but my mother’s daughters thanks to hospice had the opportunity to care for her in the home). For a first time experience as caregivers in a family, shock is but one of the many difficult emotions that will be experienced undertaking care of a dying loved one. For any family undergoing a death in the home, it is anguishing and fearful and the exhausting final days take a tremendous toll on everyone. This is what hospice care is supposed to assist families with: knowing beforehand what to expect, understanding best possible ways to manage all the advancing care needs of a bedbound person in the throes of dying, using both pharmacological and non-pharmacological means to promote comfort, and providing the emotional support to family members undergoing likely the most difficult days of their lives.
Morphine, as we all know, gets a very bad rap, thanks to the internet and people’s misunderstanding of its use, and also happens to be one of the favorite hospice medications to manage pain and shortness of breath at the end of life. How many times I have heard family members express fear of small doses of morphine, both that the loved one might become addicted, and that they could overdose them…not the least of which is the fear of giving the last dose (someone will in fact be the person to do this). The family member who suggested a fatal dose of morphine reflected a similar thought expressed too often by families after the death: the belief their loved one died as a result of morphine “overdose” that was initiated by hospice in the end days.
As a hospice nurse, I have worked in several agencies among a number of wonderful professional staff on the hospice team. But something none of us who see death on a daily basis can become complacent about is the fact that dying, though a universal and “normal” experience, has an inherent level of suffering and angst for those who are dying and those who are caring for them. There seems to be nothing “normal” about it, when you are the one staying up during the night cleaning mom’s mouth out, putting drops of medicine in, and watching the horrible rise and fall of agonal breathing.
What would any of us want, as we lay dying? To be kept clean, as this is part of providing dignity, to have our loved ones near, to have the symptoms associated with dying managed as best as can be, to die in peace, (or to die while we sleep, to be in our own home, or to hasten our dying, or prolong it)? These seem simple enough requests, yet any of us who have been present during the active dying phase of illness know how often it is in fact a great effort to keep a patient’s pain at bay, while maintaining clear thought, and reduce shortness of breath yet not have to overly sedate, and deal with the advancing care needs of a person who is bedbound and incontinent. And ultimately to advocate for the person who is dying, so that their wishes can in fact be followed.
Dying is indeed a process. It takes some people many, many days of actively dying to actually take their last breath. Families are exhausted and burdened with the care of a dying loved one, twenty four seven times the many days and weeks of a terminal illness coming to a finale. No one should underestimate how difficult the task of dying is, for the one who is dying, and those that provide the care. And hospice staff need to be available as much as possible to show family how to minimize suffering at the end of life (not just be the nurse on the phone who tells a concerned family member who calls to report loud, gasping breathing, that this is a “normal part of the dying process, and give another dose of Levsin or turn them on their side”, but be the staff who show up even though not much more can be “done” other that provide a calm presence).
Though we each of us only lose one mother, I am reminded of all the mothers I have cared for in the years of being a hospice nurse. Some mothers I have sat with as they lay dying have wanted more pain medicine, but their adult children worried about them becoming too somnolent. Some mothers have told me they wanted to use physician assisted dying, but had families and/or physicians who could not abide this decision. Some mothers were too young when they died to see their children grow up, and others held their dying children in their arms. Some mothers have been overwhelmed with guilt at the burden they feel they have become to their family. Other mothers have had an expectation even though they caused their children tremendous grief in the live-in years that those children “owed them” the day to day care as they became infirm. Some mothers died alone, estranged from their families. Some mothers had the ability to hang on long beyond anyone’s imagination, to have a new grandchild placed next to them. I have listened to a daughter tell me how hard she tried to have a genuine conversation with her aging parent about end of life planning, and how quickly her mother changed the subject to talk about the next family dinner. And I listened to my own mother as she told me only 24 hours before her death that she would hear us, even when she couldn’t answer, and to remember that as she lay dying.
Having the conversations about life coming to a close, and the many roads one may choose on the journey, needs to be part of how we provide care for anyone with a life threatening illness. The question “What would mom want?” can and should be asked long before mom is dying. I was blessed to have a mother who expressed her desires clearly to her daughters before she lost the ability to do so. Perhaps the greatest gift our mothers give us is telling us what they want as their life ebbs, how much care, how awake they want to be, how they hope to die, while they can still express what they want. And perhaps our greatest gift is to listen.
Amy Getter, MS, RN, CHPN, is a hospice and palliative care nurse consultant who shares end of life stories and lessons learned at hospicediary.com
Photo Credit: Carrie Hoekema Smith via the Pallimed Facebook Page (used with permission)