In-home hospice care is extremely common today; yet this form of end-of-life care is often dangerous and deadly.
Typically, the hospice agency delivers a bed and a big package of medications. Often, the patient’s family is encouraged to start administering morphine (a strong pain reliever) and Ativan (a strong sedative) immediately–regardless of the patient’s current health status, and whether or not the patient is experiencing pain. This can create tremendous turmoil among family members, who are torn between what they witness and what the hospice recommends. Though their loved one may not even be close to death’s doorstep, hospice representatives often push heavy dosages of morphine and Ativan, which can mean that, in their own home and at the hands of their own family members, the patient will be comatose within 24 hours and dead shortly thereafter.
Of course, not every hospice program operates this way, but such was our family’s experience.
Two preventable tragedies
My mother had liver cancer and a life expectancy of about two months when she enrolled in a hospice program. My father was not terminally ill. He had been admitted to the hospital for fluid buildup and was ready for discharge to a rehabilitation facility. My sister wanted him to go to a specific facility, but it didn’t have an open bed.
The doctor suggested palliative care so Dad could be discharged from the hospital. My sister (who didn’t mean any harm) thought palliative care and hospice were the same thing, so Dad signed up for home hospice care from a local nonprofit provider. I was attending school out of state and arrived home the day he was discharged from the hospital. Hospice workers came to our home just a few hours later.
Neither my mother, who died four years ago, nor my father, who died in May of this year, was in pain or on any pain medication prior to hospice coming into our home. When we contacted the hospice agency, concerned about our parents’ unresponsiveness after receiving morphine and Ativan, in both cases we were encouraged to continue regular administration of these two drugs.
Family members all had different ideas about the right thing to do. We counted on the hospice staff’s expertise to guide us in providing the best care for our parents. Instead, the hospice’s only advice was to continue with (what we now know were) the drug-induced murders of our parents. Both Mom and Dad were dead within 72 hours of beginning hospice “care.”
For brevity, I will concentrate on my father’s case. As a nursing student three months away from receiving my bachelor of science in nursing, I watched this entire process with absolute horror. I tried to convince my five siblings that what was happening was wrong, but they, like most people, trusted the healthcare industry. Denial and disbelief that we might be killing our father were far easier for my distraught siblings than attempting to stop that process, especially when they had no idea of how to do so.
My oldest brother, who held Dad’s power of attorney, was out of state during this process. He trusted the hospice’s advice, and I was powerless. There is a medication that corrects morphine toxicity, but it was not available to me, and I had no means by which to provide fluids.
Recently, in one of my nursing classes, we studied emergency interventions in trauma care. Trauma patients, barely conscious as a result of massive blood loss (a condition called hypovolemia), clamp their lips around moistened mouth swabs to extract whatever liquid the sponge holds. They are literally dying of thirst. The professor confirmed what I had suspected about my father’s cruel death.
Dad was heavily sedated and unable to respond in any way; yet, every time we swabbed his mouth, his lips clamped down on that little pink sponge and he sucked every drop of water he could from it. He had chronic kidney compromise due to his age, but that isn’t what killed him. What killed him was being so sedated that he couldn’t ask for the fluids he so desperately needed.
It is vitally important for families to understand what is happening when their loved one clamps down on a mouth swab and sucks. It is a huge red flag. It means the patient is dehydrated and craves water.
Many people in hospice programs live for months when they receive appropriate care, and some are even able to leave hospice programs. That could have happened to my father. But once the morphine-Ativan regimen is started, a patient dies quickly.
It looked very calm and pretty to my siblings, thanks to the Ativan that the hospice used to mask his symptoms of distress. But denial of fluids and the lack of an antidote to reverse morphine overdoses make one question the purpose of home hospice.
Providing fluids to patients as needed is simply basic care. And, given that hospices place strong medications in the hands of people not trained in their proper administration, it would seem that they should also provide the means to correct overdoses in emergency situations.
I should mention that we contacted the hospice agency to request a suction device like the one used in the hospital that very morning to clear extra secretions from my father’s throat. The hospice tried to convince us that Dad was struggling because he did not have enough morphine in him. Nevertheless, at our insistence, they delivered a suction device and it helped immensely. That was the only time anyone from the hospice agency came to our home following the initial visit.
After both my mother’s death and my father’s death, the only support we received from the hospice was a letter saying, “If you ever need help, feel free to contact us.”
Education is key
Death is so hard on those left behind, and, in our case, the hospice program only succeeded in adding remorse to our burden. The realization that both of our parents died prematurely at our own hands is difficult to bear.
We were unprepared to believe that hospice workers would engineer our parents’ death. We were in denial.
Death and denial go hand in hand. People need to be educated to recognize when loved ones are in danger of having their lives prematurely ended in healthcare settings and learn how to defend vulnerable patients’ lives in such situations. To accomplish this, I believe that educational tools, such as this newsletter as well as the Informed: A guide for critical medical decisions magazine and the Informed: Life Is Worth Living video series, must be used to alert the public to the dangerous scenarios that can occur in home hospice care, as my family experienced. Furthermore, deaths in hospice settings should be routinely evaluated through rigorous research and the findings published widely.
I’m sharing our story because I don’t want others to share our regret: “If only we had known then what we know now . . . .”
Note from the editor: There are still some hospice programs that respect the sanctity of life and are safe havens for patients in need of excellent end-of-life care. However, the Pro-life Healthcare Alliance hears from many people who have stories like KM’s. That is why our magazine Informed: A guide for critical medical decisions includes a list of questions to ask a hospice agency (see page 12) before letting hospice workers into your home. Informed: A guide for critical medical decisions is available at prolifehealthcare.org. The Informed: Life Is Worth Living video series is available online at https://www.prolifehealthcare.org/informed-life-worth-living/ or can be ordered in DVD format.