As many of you know, prior to my FBC diagnosis, I was a hospice nurse. In my career, I have worked with both children and adults. So many people have asked me, “How the f-bomb do you do that?” Well, I have to say that for whatever reason, I have been given the capacity to be present with people at the end of their lives. There is no greater honor in the world, I believe, than to be with a person at such a sacred time.
Recently I had the (sad) opportunity to help a friend transition his mom into hospice. We had a long conversation about what hospice looks like, how it works and what his family could expect (in addition to the obvious, of course). I thought that I would share this information with you for when (it’s not if, but when) you need it – though, hopefully later rather than sooner.
What is Hospice?
Hospice is the type of care designed to provide support and comfort to patients and their families facing the end of life. Hospice addresses and treats all symptoms of a disease, including physical, emotional, social and spiritual issues.
The hospice philosophy is to
offer the highest quality of care to patients and families and bring comfort, love and respect to all those they serve; through pain management and symptom control, caregiver training and assistance, and emotional and spiritual support, patients are able to live as fully as possible through the journey at life’s end.
Today there are more than 4,700 hospice programs in the United States.* Hospice programs cared for 965,000 people enrolled in Medicare in 2006,** and nearly 1.4 million people in the United States in 2007*.
People are referred to hospice when curative treatments no longer work and they are likely to die within six months if their disease runs its normal course. Now, we all know that no one can predict a person’s death, but when a disease no longer responds to treatment, it is likely that hospice would be appropriate.
If people live beyond the six month period (and it happens more frequently than you might imagine), then they can sign up for the services again, without a disruption of services. Here’s the funny thing about hospice: sometimes after people start hospice they actually get better. Not cured, but their health actually improves. Sounds counterintuitive, right? But, it happens!
Who delivers the care?
Hospice is comprised of an interdisciplinary team, including doctors, nurses, social workers, chaplains, volunteers, nursing assistants and bereavement counselors. Many hospice teams also engage complementary therapists in music, art, and massage, as well as physical and occupational therapists.
This approach is magical because each discipline brings specific talents and skills to the care of a patient. I remember working with a man who had intractable pain. No amount of pain medicine relieved his pain. It was the chaplain who, by helping him resolve his spiritual pain, helped relieve his physical pain. It was such an inspiring collaboration.
Each patient is assigned a hospice nurse who coordinates care. During weekly visits (more if needed), the nurse assesses what a patient’s needs are and then figures out how to meet those needs.
Another Silver Lining is that a patient and family have access to the hospice team 24 hours a day, 7 days a week. This goes a long way in helping patients and their families know that they are not alone.
Most hospice care happens at home, though it can be delivered in the hospital, nursing home or assisted living facility. I worked both in a hospital as well home hospice. It is a Silver Lining for people to choose where they want to die. Some people wanted to stay at home for as long as possible and then go into the hospital to die. The beauty of hospice is that it is patient and family centered, which means that the hospice team will do everything they can to fulfill a patient’s wishes.
Usually a primary doctor makes a referral to hospice, though patients can actually refer themselves (and I’ve seen it happen more frequently than you might imagine!). A consultation with hospice will then be arranged.
It is important for the patient and family to feel empowered as they transition from aggressive curative treatments to interventions focused on providing comfort. When meeting with hospice for the first time, I would encourage you (as either the patient of loved one) to ask:
Hospice is federally funded through Medicare. For younger patients, many state Medicaid plans and private health insurance plans pay for hospice care.
The death of a loved one is rotten. It is so incredibly heartbreaking. Hospice is a Silver Lining in the process. Though it doesn’t take away the pain of the loss, the hospice team will guide, support, and help during this terribly sad time. If you have to go through it (and we all will someday), hospice can and will help!
To learn more, The National Hospice and Palliative Care Organization is a great resource: http://www.nhpco.org
* Figure from the National Hospice and Palliative Care Organization (NHPCO).
** Figure from the Centers for Medicare & Medicaid Services (CMS).