“You have two options right now. You can go to a nursing home for rehabilitation, or you can go to the hospice center.” That’s what the doctor told the 95 year old ailing patient. Without hesitation she chose hospice. Her family agreed with her decision, but later admitted that none of them really knew what hospice entailed. They found the experience to be far more than they expected.
These are a few of the things families learn from hospice:
Hospice professionals teach you what to expect during the dying process. Most people don’t know what it’s like to die. Death and dying are so far removed from our normal daily lives, and we fear what we don’t understand or can’t control. Hospice professionals place an emphasis on their role as educators, both for patients and family members. They explain what is happening physically and psychologically with the dying person, what to expect next, and how family members can be a comforting presence. Above all the hands on physical and medical assistance provided, family members tell me the education is what they valued the most.
Hospice is just as much for the family as it is for the patient. In some cases, it’s the family that benefits the most from the hospice experience. The relief that comes from a dedicated professional team tending to the needs of their loved one allows family members the freedom to consider their own needs. It often comes as a surprise when they learn that the same team of people caring for their loved one is also very interested in caring for them. This includes providing emotional and spiritual support, and sharing valuable resources to navigate all of the end-of-life decisions. This care continues even after the death occurs. The bereavement care team offers support to the family for thirteen months after a loss.
Families discover what it’s like to walk through this experience with confidence. The hospice team’s objective for patient care is to meet the individual’s goals for pain and symptom management and to improve their quality of life. The team’s objective for the family is to build confidence. Confidence that by choosing hospice they are giving their loved one the very best end-of-life possible. Confidence that the hospice team has their best interest in mind and will be there when needed. Confidence that all of their questions will be answered truthfully. Confidence that they will receive training to meet the physical needs of their loved one at home if they choose home hospice. Confidence that their loved one will not die alone, and that they will not be left alone in their grief.
In my role, I spend very little time with hospice patients. It’s the families that I have the privilege of connecting with. Time and again they share what an amazing experience hospice was for them. Often they tell me that if they had only understood hospice better they would have enrolled sooner.
Angelia Neumann is the Director of Development and Communications for the Sharon S. Richardson Community Hospice