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By Rachel Bloom
Hospice Myths and Facts
Oh… That dreaded word…HOSPICE. That’s right – NO ONE wants to talk about it… But what if I say that it can also be called “comfort care” … then would you feel a little better?
My experience with hospice when my dad neared the end of his life was wonderful. These services allowed him to comfortably remain at home, surrounded by family and lots of love. People who provide hospice services do so with great compassion, making a difficult situation better for all involved.
Hospice is undoubtedly the best option in the last months of life. It offers a wide array of benefits for both the individual needing care and those left behind. Yet, despite the benefits, hospice remains a mystery to most Americans. Why is that? Is it because of society’s reluctance to discuss matters related to death?
Whatever the reason, people need to be educated about this tremendous resource and the services available. Here are the facts:
Hospice Myths and Facts
You don’t need to wait until the end to begin hospice services
You don’t have to be on death’s door to qualify for Hospice. In fact, you get the most benefit from hospice when you come on service early and develop a trusting relationship with your care team. The general guidelines say 6 months or less, but patients can be on service much longer, as long as they show signs of decline. You can qualify for hospice with a diagnosis of end stage Dementia, COPD, Kidney Disease, Cancer, Heart Disease, Stroke and other terminal illnesses. Unfortunately, the perception is that families bring in hospice only at the last minute.
Hospice does not speed up or slow down the disease process
Contrary to popular opinion, hospice does not speed up the disease process or slow it down. Hospice simply provides comfort along the way. The team of professionals includes a nurse, nurse aide, social worker and chaplain. You really get to know these special people and they become part of your village. My dad’s nurse, Missy, became a trusted friend, who reached out to us frequently to ask how things were going. She explained things clearly and told us what to expect. Alberto, the nurse aide, came on weekdays to bathe my dad and shave him so he always looked like himself.
Hospice saves you money
Because most hospices accept Medicare, Medicaid, VA and and private insurances, the patient usually has no out of pocket costs! Hospice also pays for most medical equipment including a hospital bed, wheelchair, walker, and shower chair. In addition, they also cover supplies like diapers, wipes, and some medications. In my dad’s case, we were in desperate need of a hospital bed so we could raise and lower him with ease. When he came on service, the hospital bed was delivered immediately, along with a wheelchair and oxygen for emergency use. We also received his medications delivered to the house and lots of supplies!
Hospice can extend the life of a loved one
Patients may actually live LONGER on hospice! A 2007 report by the National Hospice and Palliative Care Organization found that patients with certain terminal diagnoses who chose hospice lived an average of 29 days longer than similar patients who did not receive hospice services. Patients receive excellent and consistent care while they are on hospice. In addition, the communication between team members allows the them to catch infections early, preventing additional health complications. For example, my dad developed a wound on his back. The nurse found it right away and began treating and assessing it during every visit. Another huge benefit is that they even provided the wound care supplies!
You don’t “go to hospice”, hospice comes to you
You can have Hospice services ANYWHERE and change your mind at ANY TIME. People often think that you have to “go to hospice.” In fact, hospice is a service that follows you! Whether you are at home, an assisted living facility or nursing home, the team comes to your door and provides education, support and updates to your family. If you decide that you don’t want to be on Hospice anymore (this is rarely the case!), you can change your mind at any time. Hospice even pays for respite care for 5 nights at any skilled nursing facility. If my mom ever felt like she needed a break, hospice would arrange transportation and make regular visits to my dad at his respite facility.
Hospice provides peace of mind
When the time comes near, families are always grateful to have a peaceful end of life experience, as opposed to their loved ones being hooked up to all sorts of tubes and wires. The typical environment is usually very comfortable with families sharing stories and holding the hands of their loved ones. The hospice team is usually able to prepare these families, providing education and support along the way. For example, when my dad was declining, we could not move him from his hospital bed so I decided to bring our Friday night dinner to him! I put a table in his room and set up chairs so we could all sit comfortably. We told stories and sang songs. One of my most precious memories is that my dad was able to sing along with us and he felt so much love around him.
Hospice staff is available 24/7
The kind people who work for Hospice, aka the “Comfort Care Team” are on call 24/7…so that means if the patient isn’t feeling well or you have a question about the medication, you can call a nurse and she will make a visit if needed. Whether it’s at 3 am on a Saturday night or even Christmas, a Hospice nurse will be there for you! I must have called the on-call service so many times with medication questions and the need for a visit. When my dad began to transition, it was a weekend. of course! The nurse didn’t hesitate to come over and sit down with my mom and me, preparing us for his passing. She offered a continuous care nurse (hospice will pay for a nurse to stay with a patient and administer meds at the end of life if they meet Medicare requirements). My mom actually declined the continuous care nurse because wanted to take care of him on her own. To this day, she is glad she was able to spend that special time with him.
The bottom line
I truly hope that hospice won’t be such a scary word for you the next time you hear it. There are so many benefits to choosing comfort care at the end of life.
This holistic service is all about improving the experience for both the patient and the family. Each patient – and their situation – is unique, so the care plan provided is individualized. It’s a whole lifestyle of care with dedicated teams that include a doctor, nurses, social workers, pastoral counselors, home health aides, bereavement counselors and other volunteers. If needed, they can even provide pet care. The goal is to take the burden of care off the caregivers so they can really focus on their loved one. And if you are one of the lucky ones who learned the benefits firsthand, help us educate others about hospice myths and facts.
I wasn’t able to change the outcome of my father’s disease, but I was sure able to give him lots of love and comfort during his last days.
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About the author
Rachel Bloom, LCSW is a Community Liaison at Heart to Heart Hospice based in Plano, Texas. A caring and loving soul, Rachel is on a mission to educate the community to help them differentiate between hospice myths and facts. She strives to provide both patients and families with compassionate and helpful holistic hospice services and develop positive working relationships with health care professionals who deliver these services.
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