The end of life can be a tough subject to address with your aging parent or loved one. And while it’s not a fun thing to talk or even think about, it’s important to be prepared for what’s to come. One such situation is receiving a terminal medical diagnosis.
While thinking about final wishes such as funeral arrangements and a will is important, it’s equally as crucial to think about the best care possible for your loved one between diagnosis and the end of life. That’s where hospice can help. Hospice is often misunderstood, and because of that there are many who miss out on the benefits. In this article, we’ll outline three things most people don’t know about hospice so you and your loved one can make the best decisions possible during this important time.
Entering hospice doesn’t mean your loved one is definitely going to die soon, or that they (or you) are giving up
It may seem to some that hospice is a sign that someone is “giving up,” or that the end is very near. The National Hospice and Palliative Care Organization (NHCPO) reports that Medicare patients received hospice services for 76 days, on average. In most cases, hospice is intended for individuals with a life expectancy of six months or less, but every situation is different. Entering hospice earlier rather than later can mean the patient experiences better pain and symptom control, as well as an improved quality of life – often in their homes.
It’s also commonly believed that hospice hastens death. According to the Hospice Foundation of America, “Studies show exactly the opposite. Although hospice care neither hastens death nor prolongs life, patients with certain illnesses actually live somewhat longer with hospice care than those with the same illness who don’t choose hospice care. And regardless of the illness, patient/family satisfaction with services received are consistently higher when hospice is involved.”
And did you know you can exit hospice (and even go back in)? At any time, patients can revoke hospice participation for any reason and without penalty. Perhaps their medical condition improves, or they decide to pursue treatment again. If they chose, patients can reapply for hospice benefits at a later time.
Hospice can be utilized by everyone, and it helps more than just the patient
Many people are still under the impression that hospice is an out-of-pocket “luxury” expense. This leads to many people who could use hospice services not taking advantage. In reality, it’s a Medicare/Medicaid benefit, with no limits on length, and it’s also covered by many private insurance companies.
Another frequent belief about hospice is that it’s only for certain conditions like cancer. When hospice began in the U.S. nearly fifty years ago, most hospice patients had cancer. Now, while many hospice patients have cancer, the majority have other life-limiting illnesses such as Alzheimer’s. ALS, and end-stage heart, lung or kidney disease.
It’s also important to know that hospice workers are there to help the entire family – not just the patient. Hospice workers are trained in the grief cycle, and will help you and your family make the most of this precious time in your loved one’s life.
Most people don’t get 24/7 help, and friends & family will still be the primary caregivers
It’s a common misconception that when your loved one enters hospice, there will be someone caring for them every hour of the day. Most hospice care takes place in the home rather than a facility. And while hospice workers are available by phone 24/7 for questions and crisis situations, most care never reaches the level of round-the-clock support. A recent Kaiser Health News article outlines the amount of care you’ll typically receive:
“According to Medicare, hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.”
This puts most of the burden of care on the patient’s friends and family. In fact, that’s what inspired one of our caregivers, Ellen, to start her career in caregiving:
“My experience in caregiving started with my own family. I helped to take care of my father for the last few years of his life when he also had other caregivers. I watched what they did, and also observed the interactions with hospice. I witnessed the load that was placed on my mother and realized it was a lot for her to handle alone. When a caregiver came in even for 3 hours in the morning to do the showering, grooming, dressing, and cleaning, it made a big impact for my mother.
With the extra help he could stay at home and ended up passing away at home in his own bed. I was able to see up close how important it is to age in your own home. He was mentally alert at home but when he went out to the hospital he was completely confused.”
Hospice can be an incredible experience and should be considered if it’s an option for your loved one. Ellen, who is specially trained in hospice, shares her thoughts:
“Only until I had some experience with clients on hospice in addition to the experience with my father did I recognize it was a beautiful thing. There is a special intimacy that comes with the process of dying. I feel honored to be one of the last people to be with them in this important time. It has helped me to grow as a person.”
If you’re not sure if you can handle the extra caregiving tasks not covered by hospice on your own, consider bringing in a caregiver like Ellen. This assistance can bridge the gap between what is provided by Medicare and what falls on the shoulders of friends and family. Learn more about our Hospice Specialty Program and how in-home care works with hospice. And please reach out to talk with someone on our team when you are ready.