There are so many considerations for both the patient and family to consider when selecting care options. Here we are going to review Palliative, End-of-Life Doula Caregivers, Hospice and The Lovie Theory Care options.
PALLIATIVE CARE
When you have a serious illness, palliative care may be the right choice for you and is appropriate at any stage of a serious illness. You can also have palliative care while you are receiving medical treatment for your illness. To learn more about Palliative Care you can take The Get Palliative Care quiz - Is Palliative Care Right for You? by clicking here.
HOSPICE CARE
Both palliative care and hospice care attempt to provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.
Hospice care is most often offered only when the person is expected to live 6 months or less. You can enter a hospice program if your doctor states that you have a terminal illness and that death can be expected in 6 months or less. You can stay in hospice beyond that time if your hospice team decides you still have only a short time to live. Once you enter into hospice you can no longer receive preventative treatment for your illness or use the emergency room. Hospice becomes your only life line. Vistas Healthcare provides the Considering Hospice Care: A Discussion Guide for Families PDF guide in English, Spanish and Chinese.
END OF LIFE DOULA CAREGIVERS
The #1 fear of the dying patient is that they do not want to be a burden to their family. As Suzanne O’Brien RN, Founder of Doulagivers, details on her website, Doulagivers are non-medical professionals specially trained to care for the elderly and those at the end-of-life. Doulagivers follows a holistic model of care that supports both patients and their loved ones. The End-of-Life Doula role is to accompany the dying person and their loved ones through their final months, weeks and days of life. The Doula provides support, resources, education and friendship for those who accept and embrace dying as a transition period of life, not an abrupt ending.
THE LOVIE THEORY CARE
The Lovie Theory was born to help inform people through of their care options through our own personal experience. This is where we share our raw journey. With our Mom’s journey it only included Hospice Care. With our Dad’s journey he used Palliative Care in the beginning and transitioned to Hospice Care three days prior to his passing. His POA was enacted and he was unable to make this decision on his own. His wishes were to never enter into hospice care after seeing what his wife had experienced.
In our experience with both parents, 24 hour hospice care did not truly mean 24 hours around the clock care. Let us take you back to the beginning (it is a long story, but a must read). Our Mom made the difficult decision and signed the papers to enter into hospice on October 16, 2018 due to the fact that her oncologist could no longer increase her pain medication to deal with the excruciating pain she was experiencing. Her only option to address the pain was to enter into hospice. We were informed by the healthcare professionals that even though hospice takes individuals that have 6 months to live, they also have patients that enter into hospice that live up to two years. Hence, we never thought she only had weeks to live. One week earlier, this was the same lady that was going to her doctor appointments, having in-depth conversations with her daughter, grocery shopping for her husband (she could not eat and on a feeding tube), and making future life plans. They explained that her only alternative for pain relief was to enter into hospice. When the immediate family arrived to meet with our Mom, hospice had already connected her to the Fentanyl pump and had denied and removed her feeding tube and weekly IV. Fentanyl is a synthetic opioid that is 80-100 times stronger than morphine! In addition to the pump, she needed to receive a secondary dose of Fentanyl, every 15 minutes manually, to manage her pain.
Let’s pause here, and realize what’s missing so far from this story? Our Mom had entered into hospice, our Dad was fighting for his life, and yet no caregiving individuals or schedule had been established for either of our parents. The security of the hospice program had been broken. We were quickly in a bit of a panic mode! How do we change our lifestyle, how do we get off of work, rearrange our children’s schedule (even care for our pets), to take care of our parents 24 hours a day as she was not even enable her to go to the bathroom on her own or even lift a glass of water to her mouth. She was so weak she wasn’t even able to get out of bed. We were completely blind stricken by this entire process. Of course, we were not going to abandon them. We had two choices. We could put our Mom in a nursing home or in-patient hospice facility OR we could fight for her request to pass at home and stay to care for them as they have cared for us our entire life.
We choose the only option…to honor her wishes to pass at home. Next, our reality became our new normal. We couldn’t imagine our Mom ever thought the 24 hour in-hospice program would include her son providing her private hygiene. It’s natural instinct for Mom’s and Daughter’s to be comfortable with private hygiene, but in this case we needed to break the norm and our brother was a loving son who didn’t miss a beat to care for his Mom. Because, in the beginning, we were not trained, it actually took three of us to change her Depends after bowel movements even though she weighed less than 80 lbs. at this time. The amount of elimination at this stage of the end-of-life process took one person to hold her legs, another person to keep the pad in place and another person to clean her. In some cases, this was happening multiple times within the hour.
Please do not misunderstand us, the support that the in-home hospice team provided was greatly appreciated. The problem was they could only come in one time per day for less than 30 minutes and we received no proper training. Also, supplies (wipes, mouth swabs, adult briefs and wipes, under-pads, etc.) were off not offered to us until we mentioned it to the Hospice nurse. Until we received the mouth swabs, our Mom was not receiving any moisture care to her lips/mouth. The 24 hour perception of hospice is that they are “on call” 24/7 in case of an emergency. For in-home hospice they are only available to visit the home one time per day for routine care. Our Mom lingered on for two weeks, and transitioned over on November 2, 2018.
Thankfully, we were fortunate enough that my sister and I were able to stay with our parents and care for them 24/7 during those two weeks. Don’t get us wrong, it wasn’t easy or convenient for us to not show up at work or be with our family for two weeks. It was a very challenging time for us and our co-workers who had to cover the load in our absence. Also, we give extreme gratitude to our husband’s and children whom graciously and unselfishly fended for themselves during this time. As my boss personally stated to me, “Ann Marie, don’t have any regrets, you are where you need to be”. That statement brought me to my knees and will be a moment I will never forget. Fortunately, Julie’s boss had the same sentiment and support. We will forever be thankful to our family, co-workers and customers for supporting us through this once in a lifetime journey with each of our parents. We were right where we needed to be, with no regrets.
“We were right where we needed to be, with no regrets. ”