It sounds strange to say that hospice saved us when they came to help my dad die, but that is exactly how it felt in those last 7 days when the death we were denying came creeping closer and closer, causing more pain and suffering in its wake. I was handling the logistics, the loose ends, the paperwork, the communications like the 20-year corporate professional that I was but seeing my dad – the man I knew could build anything, fix anything, and knew everything – struggle and suffer with the pain and shrink to a shadow of the man he was 8 weeks prior was something that I was entirely unprepared to handle. And, for a man who was never prideful and always humble in his life, he was trying to maintain a semblance of strength and control as he was dying in front of his children which made caring for some of his basic physical needs challenging. And while I will forever cherish the moments of sitting next to his bed watching the World Cup and chatting about nonsense just, he and his two kids, there were questions to be asked and conversations to be had that did not come easily, if at all, when all he wanted from us was time together. And, so when I say that hospice saved us, I mean they saved a father from feeling embarrassed in front of his adult children, adult children from having to ask questions that they didn’t even know to ask, and a family from facing a heartbreaking loss without the support to make it as calm and comfortable as it could be.
Hospice is medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life, using an interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family. (Hospice Foundation of America.) During the seven days that our hospice nurse supported my family, he administered pain medication, set up a comfortable space for eating, sleeping, visiting, supported his bath and toilet needs, monitored his vitals, communicated with the others on the medical team, and improved other unrelated physical symptoms to create the most comfort for my dad. All those tasks felt like weights lifted off my brother and my shoulders. But nothing compared to the conversations he prompted with my dad and with us as a family. The day before my dad lost consciousness, our hospice nurse prompted a conversation between my dad and my brother, and I that brought clarity, understanding, forgiveness, acceptance, and peace. I believe this conversation allowed my dad to settle into his last days in a state of calm, surrounded by love as he left this life. It seemed like our hospice nurse had superpowers at the time, and in retrospect and with further experience with hospice, I do believe the individuals who have committed their lives to supporting people and families through this aspect of life, indeed, have powers that most of us cannot carry.
I can say from experience that making the call to hospice is not an easy one to make and can feel like admitting defeat to a death that you do not want to hasten. I can also say that I wish we had made the call days if not weeks earlier. You may not feel ready for the end, you may not know what you need, you may think you have it covered, but do consider what support hospice can provide to you and your family.
What is covered?
Time and services of the care team, including visits to the patient’s location by the hospice physician, nurse, medical social worker, home-health aide and chaplain/spiritual adviser
Medication for symptom control or pain relief
Medical equipment like hospital beds, wheelchairs or walkers and medical supplies like bandages and catheters
Physical and occupational therapy
Speech-language pathology services
Any other Medicare-covered services needed to manage pain and other symptoms related to the terminal illness, as recommended by the hospice team
Short-term inpatient care (e.g. when adequate pain and symptom management cannot be achieved in the home setting)
Short-term respite care (e.g. temporary relief from caregiving to avoid or address “caregiver burnout”)
Grief and loss counseling for patient and loved ones
What is NOT covered?
Treatment intended to cure your terminal illness or unrelated to that illness
Prescription drugs to cure your illness or unrelated to that illness
Room and board in a nursing home or hospice residential facility
Care in an emergency room, inpatient facility care or ambulance transportation, unless itis either arranged by the hospice team or is unrelated to the terminal illness
Knowing what hospice covers is helpful as you receive news of a diagnosis or prognosis that limits time left or rules out a cure as a result. Transitioning your thought process and energy from a fight mentality to one of providing a comfortable, quality lifestyle for as long as is possible takes a minute. It is difficult enough to receive the news of a limited amount of time left and that medical treatment is not providing the desired result. According to the Hospice Foundation of America, the standard guidance for when it is time to call in hospice is:
The patient has 6 months or less to live, according to a physician.
The patient is rapidly declining despite medical treatment (weight loss, mental status decline, inability perform activities of daily living).
The patient is ready to live more comfortably and forego treatments aimed at prolonging life.
This guidance is helpful yet is just guidance. You also need to have the conversation with your loved one and family about what is right – for your loved one first and foremost. Also, making the call, gathering the information, and making contact sooner than later can only benefit you all when the time comes that you need them to engage. When we were given the 6-9 month prognosis from my dad’s oncologist, we thought we would have the summer together to make a few more memories and have a few more stories to tell. He very quickly declined and died 8 weeks later. It’s hard to say if we would have had more time if we had called hospice sooner, but it is clear to me now that we all would have had more support, understanding of what was happening, physical comfort, and peace to the end.
This post is written with many thanks and much respect for Justin Porter, BSN and paramedic with Aero Methow Rescue Service and Okanogan Palliative Care Initiative.
Time is finite. Love is eternal. Forgiveness is everything.