Living with Dying: Myths about hospice

Editor’s note: This column is provided by the End of Life Care Partnership that has been operating here in Addison County for eight years. Its mission is “to create a framework for our organizations to collaborate on our common goal of providing education about dying, death and options for care.”
This column will work if we get questions from you, our readers. We want to hear from you, what is on your mind and heart regarding this challenging issue that each of us will need to address in our lives? Send your questions to [email protected].
More and more information is being written about the hospice care, consumers need to know the basics in order to take advantage of this benefit.
Hospice is comprehensive medical care provided to patients who have advanced illness when cure is not possible and life expectancy is estimated to be approximately six months or fewer. High-quality care continues to be provided, with a goal of moving away from a “medicalized” experience with burdensome interventions. In its place is attentive, whole-person care, focusing on maximizing quality of life and comfort while minimizing suffering. Hospice care recognizes that death is a natural part of life, and helps to prepare and support patients and families as changes in body and spirit occur.
Hospice care is provided by an interdisciplinary team, which commonly includes primary care providers, the hospice medical director, nurses, chaplains, home health aids, social workers and volunteers. This team helps to develop and implement a care plan that recognizes the unique needs of each patient and their family. Good communication among patient, family and the hospice team is essential as many questions occur and occasionally unexpected issues can arise.
There are many Myths and misconceptions about hospice. Here are a couple:
Myth #1
“When you go on hospice, they give you morphine and you die.”
Signing onto hospice is about LIVING; living the best you can for as long as you can. A core commitment of the team is to assess all forms of suffering, which can be emotional, spiritual, psychological and physical.
Hospice teams have expertise in managing these symptoms in a variety of ways, including with medications.
Opioid medication like morphine can be a powerful tool for common symptoms in life-limiting illness including shortness of breath and pain. Side effects are minimized and managed with careful dosing. When used appropriately in terminal illness, these medications do not lead to addiction or other significant negative effects.
When death is near, new or worsening symptoms can arise quickly, which benefit from expert evaluation and thoughtful titration of medications. Sometimes, patients are referred to hospice so late that there are active physical symptoms that require a rapid treatment response. The goal is always to improve comfort, to honor the natural process of dying, and not to hasten death.
Myth #2
“When you sign onto hospice we will have someone in our home providing care all the time.”
When you sign onto hospice you will have a team of providers (nurse, personal care aide, social worker, chaplain, volunteers) helping to care for you. They will visit based on your individual care needs, but are not with you around the clock. The hospice team will teach family members what they need to know in order to care for their loved one at home. The hospice team is always available for telephone support, and for any urgent needs that arise. It is important for the patient, family and hospice team to have good communication around care expectations and concerns. Some families want more visits from the team, while others prefer more privacy and fewer visits. The care plan and visit frequency may change throughout an illness. The goal is for the hospice team to understand individual hopes and worries, and to do their very best to address these issues.
Next month we will be addressing addition myths, but would love to hear from you. What worries or concerns do you have about hospice care?

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