This article is an additional feature in a series covering important topics about caring for aging parents. To view previous articles on this topic, please visit RWmagazine.com/read.
When a parent or family member faces a terminal illness or injury, hospice care can improve quality of life—and provide support for your family.
As parents age, there may come a time for decisions about end-of-life care. Before that happens, take time to learn about hospice care. Early planning will allow you to better understand your parents’ wishes and provide your parent and family the opportunity to receive a full complement of hospice benefits and services.
Three local women share how hospice care makes a compassionate difference in end-of-life care:
- Jacquelyn (Johnson) Gosse learned about and experienced hospice services when her father quickly became terminally ill.
- Beverly Hayne, executive director of Seasons Hospice, provides hospice care to patients through the community-based, nonprofit organization.
- Sherry Rengstorf, RN, patient care coordinator and nurse for the Mayo Clinic Hospice program, considers hospice care the most rewarding work she has ever done.
“Hospice involves a team-oriented approach to expert medical care, pain management and emotional and spiritual support expressly tailored to the patient’s needs and wishes,” says Hayne. “It is a family-centered, team approach that focuses on the dying person’s needs—physical, psychological, social and spiritual.”
Hospice care recognizes dying as a normal part of life. “The focus is living life fully and as comfortably as possible,” adds Rengstorf. “Hospice entails a palliative, comfort care approach instead of the traditional medical care and curative treatment approach.”
“For me and many of the patients I work with, hospice means bringing hope—the hope that life’s final journey will be well traveled, with dignity, comfort and peace at the end,” Rengstorf says.
Hospice care can be provided by family members or professional staff, including physicians who are certified in both hospice and palliative care. Social workers provide counsel on important topics and services for the patient, family and team. Hospice nurses are specially trained in end-of-life care and provide care coordination, direct patient care and 24/7 phone support.
“My parents chose not to be informed of the estimated length of time my dad had left with us, but I am a planner and wanted to know,” she says. “The nurses respected this and privately shared their knowledge with my brothers and me about what to expect as the days progressed.”
Help in Different Settings
Hospice services are available to terminally ill people wherever they live. “This means that a patient living in their own home or a family member’s home, assisted living facility, adult foster care, nursing facility or long-term care facility can receive specialized hospice visits,” says Hayne. “The majority of hospice patients are cared for in their own homes or hospice facilities.”
The Johnson family initially decided they would have a hospice nurse go to her parents’ home once a day to take care of her father, and her mom would remain the primary caregiver, but plans quickly changed. “On the morning that my family was going to meet with the hospice representative, my mom slipped on the ice and broke her arm,” says Gosse. “We all believe that God was saying, ‘You can’t do this yourself. You need help.’”
“Before our experience with hospice care, I envisioned an elderly person who was at the end of a long battle with a particular disease,” says Gosse. “My dad’s diagnosis of cancer at 62 to the time when he passed away was only a few months. We had a lot to learn about cancer treatment, drugs, clinical trials, legal aspects and end-of-life decisions in a relatively short time.”
Hayne describes how the process of enrollment into hospice care typically begins as soon as the patient’s doctor makes a formal request or a referral. The hospice team verifies medical eligibility and provides information to the patient and his or her loved ones.
“Generally there is no out-of-pocket cost for hospice care,” says Hayne. “Hospice is paid for through the Medicare Hospice Benefit, Medicaid Hospice Benefit, VA and most private insurers, HMOs and other managed care organizations. If a person does not have coverage through Medicare, Medicaid or a private insurance company, hospice will work with the person and their family to ensure needed services can be provided.” She adds, “Room and board in a hospice facility or nursing facility will be the responsibility of the patient.”
It is never too early to have conversations about quality of life and goals of care, as people face end-of-life issues due to disease, normal aging or a serious accident. Rengstorf recommends starting a conversation with parents about what they do not want in the event that they develop a life-threatening disease. “Once a health condition cannot be cured or improved and there is functional decline, the time might be right for the patient’s health care provider and family to discuss hospice philosophy and services,” she says.
The Johnson family’s initial plan for in-home hospice wasn’t meant to be. However, the inpatient hospice facility where her father and family were cared for was the best choice after all. “My parents built their home together, and I’m glad I have happy memories of him in their home, instead of spending his last painful days there. When we spent time at hospice, family and friends could visit, we could stay the night if we wished. There was a kitchen available, and musicians came and provided a welcomed distraction,” she recalls.
Gosse remembers the spectacular view from the windows of her dad’s hospice room—with beautiful trees, fresh December snow and deer that would come up to the window. “I think back to that time with a great deal of comfort and peace,” she says. Those peaceful memories will never die.
Trish Amundson is a Rochester-area freelance writer.