For many, hospice is a subject that’s hard to talk about, and it can be especially hard during the holiday season.
Patients, families, and even some health care providers can be uncomfortable discussing a person’s declining health. Indeed, studies have shown that most people eligible for hospice do not receive it, despite the many benefits and the fact that the costs are completely covered for most people. People may avoid the subject of hospice, or even decline to start it, for a variety of reasons. Some falsely feel that to go on hospice means that they must give up hope or their will to keep fighting. Sometimes the family members making the medical decisions don’t want to admit that their loved one is declining. Regardless, hospice can provide peace, dignity, comfort, as well as emotional, physical, and spiritual support for those on their final journey.
Those dealing with the prospect of a loved one or themselves being on hospice must cope with a variety of emotional issues. Family caregivers can be stressed to a point of breaking. Guilt that they cannot be there 24/7, or the disbelief that a once vibrant loved one is no longer strong, can challenge one’s emotional health. Grief, guilt, and avoidance are all common issues. Patients often have stresses of their own. Guilt about needing to ask for help, confusion from memory issues, fear of the unknown can all play a part.
There is a general lack of understanding about the benefits of hospice and who is eligible. Hospice is much more than the medical prognosis and care. It can be extremely beneficial emotionally as well, not only by easing the pain, loneliness, and anxiety of the patient, but also helping alleviate or lessen some of the stress and guilt for the family. Patients and families who come on to care sooner often times have better outcomes and less complicated grief.
Hospice agencies, like Heartland Hospice, employ a care team approach. Doctors, nurses, aides, social workers, spiritual coordinators, volunteers, massage therapists, dieticians, bereavement coordinators, and others all work hand-in-hand to provide well-being for not only the patient, but for the families as well. Families can be comforted by the fact that their loved ones are getting an extra level of care.
On the emotional side, social workers can help patients and their family deal with issues like unresolved family dynamics, or help navigate some of the medical and financial considerations. Spiritual counselors are available to help those who want spiritual guidance and resolution. Bereavement staff checks on the well-being of the family members, not just immediately after the process, but even 13 months after the passing of their loved one.
Volunteers are a crucial part of the process. They help relieve loneliness, boredom, fear, and often lend a caring ear to listen, or a hand to hold. For family, it helps knowing that someone is there caring for their loved one when they can’t be.
David Leaf is a hospice volunteer for Heartland Hospice in the Brainerd lakes area. Sixteen years ago, he lost his mom to lung cancer. Before her struggle, David had never heard of hospice and had no idea about its benefits. He saw first-hand the incredible care of hospice staff and volunteers gave his mother. When it was over, David volunteered to give back to others.
“I felt a calling,” he said.
Over the last sixteen years, he has provided numerous acts of caring and love for hospice patients. Acts like adopting a dog from a family struggling to care for it, attending vigils, and helping patients deal with anger from their prognosis. Many other volunteers have chosen to “pay it forward” after they felt gratitude for the care their loved ones received.
In the end, hospice can be a beautiful conclusion to the journey. The care given is extremely helpful for easing pain, anxiety, and maintaining dignity for those who need it. It’s important to remember that starting hospice does not mean you have given up hope for a recovery, as people can “graduate” from hospice. Also, hospice is not a place; the care team comes to the patient where they are, be it in a nursing home, assisted living, or in their own home. If you or someone you know have questions, consultations are always available to determine a person’s eligibility or answer questions.
Tips to help
Remember that people often wait too long to have the conversation. Sooner is better, especially with the holidays coming around.
Your loved ones should be comfortable around the holidays, not feel anxiety. Start talking before the holiday.
- Sometimes it’s good to have a “warm-up” conversation, and then return to it to allow people to mull it over.