“People should open their arms to hospice much sooner,” Betsy Pyle, whose husband received hospice care, said.
Unfortunately, families and their loved ones wait too long before seeking out hospice options. According to the National Hospice and Palliative Care Organization, a greater proportion of Medicare patients were enrolled in hospice a total of seven days or fewer compared to all other lengths of service categories.
BEING DIAGNOSED WITH A TERMINAL ILLNESS
When an individual is diagnosed with a terminal illness such as cancer, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), dementia, etc., it can be difficult for them or you to manage the day to day as their health and mental condition continues to decrease and their frailty increases.
After diagnosis, most families would prefer to talk about their loved one’s wellness than to think about their loved one’s illness. It’s only natural; however, by having this mentality, advanced care planning and even mourning tend to be avoided.
Limited hospice care education and the mentality that end-of-life care shouldn’t be discussed because it makes people uneasy hinders individuals from receiving hospice care services, which is covered under Medicare Benefit Part A with no out-of-pocket costs to the patient.
ADVANCED CARE PLANNING: FINDING HOSPICE
Advanced care planning and hospice care could benefit your loved one sooner than you might think. Talking with your loved one about their end-of-life care wishes can help them; researching options available to them, like hospice, can relieve pressure from them; spending quality time with them instead of “taking care” of them can give them and you comfort.
Hospice care services include management of pain and other symptoms, medication and medical support, additional medical advice, emotional, psychological and spiritual support, as well as grief and loss counseling. Hospice is special because it concentrates on care, not cure. It enables individuals with a terminal illness to make decisions about how and where they want to spend the rest of their lives and to spend valuable time with their family for as long as possible.
For one WV Caring family, it was essential to spend quality time with their loved one before his passing. Pyle’s husband, Jamie, an associate dean for medical education, was diagnosed with Lou Gehrig’s disease after noticing a change in his gate. The family knew there was no cure for this disease. Pyle and her son, Wesley, tried to be Jamie’s primary caregivers as it was important to the family to remain as a family unit in their own home; however, they needed a little bit of help.
“Hospice is really about living life to the fullest while you’re alive and not focusing on the end of life. All of the support services that I saw put into practice helped me and I know comforted my husband,” Pyle said. “Grief begins long before someone passes away, and it’s important to have that emotional and social support that WV Caring provides for the family, not just for the patient.”
“WV Caring provided support that was needed including giving advice on how to handle situations as they arose, medication that was needed and visiting,” Pyle said.
Hospice care can be provided at your loved one’s residence, assisted living facility, nursing home, essentially…wherever you call home.
For another WV Caring patient, it was essential to be at home during this time. Barbara Wetsch’s mother, Mary Sue, who suffered from glioblastoma, become a hospice patient of WV Caring after experiencing a heart attack in July 2018. The doctors thought that with Mary Sue’s age and glioblastoma, catheterization was not an option. The doctors suggested Mary go home with hospice care.
“It was very important for my mom to be at home, that’s where she wanted to be,” Wetsch said. “West Virginia Caring stepped right in and immediately provided us with everything we needed. When I would have to call at night, they were immediately on the phone with a nurse.”
“Knowing that I could call at any time, it was a secure feeling and some piece of mind that we knew that someone would call or come at any time, day or night,” Wetsch continued. “My mom always looked forward to the nurses, and the aides, anyone coming from West Virginia Caring, and they always brightened her day. They would talk to her, and laugh, and joke.”
“No one wants to have to know that their loved one is going to pass, but WV Caring was able to help us and make it an easier time for us. I don’t have any regrets. WV Caring gave me the opportunity to spend more time with my mom,” Wetsch said.
“WV Caring was very upfront with us to explain what to expect. It gave us time to prepare, and to say our goodbyes, and to make sure we had told her everything that we wanted to tell her. It was very comforting to have WV Caring there and to help us through this process.”
Typically, hospice starts as soon as there is a formal request from the patient’s doctor; however, a family member, patient, friend or another healthcare professional may make a referral. From the acceptance of the patient, hospice care will be provided 24 hours a day, seven days a week.
For one WV Caring husband, it was important that his wife come home and receive hospice services soon after. Robert Howdyshell’s wife, Louise, was diagnosed with Alzheimer’s four years ago. Robert knew that he wanted to keep his wife at home.
“That’s how I got involved with WV Caring,” Howdyshell said. “Starting that day when I brought her home from the hospital, they had the bed here and the left and the nurse comes two days a week. I get right on the phone with them and they either help me straighten it out over the phone or they are here. It’s very comforting to know that.”
“You can’t spend day in and day out with nobody to talk to you. That’s a help to me to have someone to talk to every day.”
For these three WV Caring patients and their family members, an early referral helped them spend quality time together and helped the patient live life to the fullest for as long as possible. As a family member, it can be difficult to recognize if your loved one needs hospice. As a leading hospice provider in West Virginia, it is our job to help you decide when the time is right.
- Have you noticed a sudden decline in your loved one’s health?
- Does your loved one have to make frequent trips to the emergency room at the hospital?
- Is your loved one losing weight rapidly?
- Is there a decline in physical and mental function of your loved one?
- Is your loved one experiencing pain that can’t be relieved?
- Is your loved one having difficulty swallowing?
- Is your loved one’s illness causing medical conditions like increased infections?
If you answered yes to these questions, it may be time to think about hospice care. Even if you still aren’t sure, it’s important that you do not hesitate to contact a hospice care provider to at least receive an assessment sooner rather than later.
Although end-of-life care may be difficult to discuss, it is best for your loved one to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice is needed. By having these discussions in advance, patients are not forced into uncomfortable situations. Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.
Hospice care may help your loved one sooner than you think. If you need a hospice care assessment, call our offices: 1-866-656-9790.