For the last few months, my family has been dealing with the reality that my 93-year-old father’s health is failing. Following a health crisis that resulted in his being hospitalized and no longer able to make decisions himself, my mother and siblings all agreed that he would not want any heroic, life-extending treatments.
He survived that hospitalization, however, and is now living in a memory care home. He is receiving excellent (and very expensive) around-the-clock care.
When he was discharged from the hospital, I made it known to everyone involved—his primary care doctor, the visiting home health nurse, and his care manager—that we were open to getting hospice involved when they felt the time was right.
Well, I watched him refuse food, lose weight, and develop one infection after another. He looked more frail every time I saw him, but still no one mentioned hospice. Finally, I asked my mother and siblings to support me in arranging a hospice consult.
“What are you hoping for by getting hospice involved?” my Dad’s primary care doctor asked.
“Well,” I replied, “Dad’s losing weight and he keeps getting infections. If he gets a fever and doesn’t respond to the antibiotics, the care facility will send him to the emergency department, won’t they? Their job is to keep him alive. But we don’t want Dad to die in the hospital. Hospice will help keep him comfortable now, and give us a plan to keep him out of the hospital, and to know when and how it’s time to let him go.”
Related post: End of life—”Five Wishes”
The physician agreed with me. He knows that when a patient goes to the emergency room, the family can lose control of what happens next. That’s how our loved ones end up in the ICU even if we have Do Not Resuscitate (DNR) orders and living wills.
Read some horrific examples from an ICU nurse:
You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth.
People who are at the end of their life and are being kept alive artificially have a way of shutting down. Fighting this process is not a peaceful act.
In his book, The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life, Ira Byock, MD, seeks to change the way patients—and their physicians—think about end-of-life care. He writes that Americans need to shift their expectations from “quantity of life” to “quality of life.”
Hospice is for patients with fewer than six months to live “if the disease runs its normal course.” Any “curative” treatment is not reimbursed (all hospice is covered by Medicare). However, with adequate pain control, nutrition and emotional support, some hospice patients are actually discharged—alive—after six months.
Palliative care, a relatively new specialty, is on option for patients with a life expectancy of roughly 18 months. Curative treatments are allowed, but palliative care puts more emphasis on the physical and emotional side effects of illness and/or treatments such as pain, nausea, fatigue and depression. Typically a team effort, such care involves physicians, nurses, counselors, chaplains, physical therapists and nutritionists.
In Dr. Byock’s experience, “patients receiving palliative care experienced substantially lower incidence of depression and higher quality of life.” He describes a study that found terminal cancer patients receiving palliative care lived, on average, 2.7 months longer than those not receiving palliative care. And at a fraction of the cost of the new chemotherapy drugs.
Ironically, some of the new (and amazingly expensive) cancer drugs are considered successful if they extend a patient’s life by 2-3 months.
Oncologists, who apparently believe the word “die” contains four letters or has the power to kill, tend to focus on getting their patients safely through each treatment, and they would say that too early end-of-life discussions are tantamount to giving up.
The problem is that when we do not plan, especially for the inevitable, we risk chaos and unneeded suffering. A dangerous gap of information occurs when we only discuss disease, diagnosis and therapy and do not review side effects, alternatives and long-term desires. Patients fall into this chasm of absent communication and experience pain, fear, and lost opportunity.
Palliative medicine and hospice offers to each patient the opportunity for improved life quality and the chance to live better and longer.
How long would I have had to wait before Dad’s doctor suggested hospice? I don’t know, but I’m glad I took the initiative before Dad was sent to the hospital. My family and I have more peace of mind knowing we now have a plan and our spouse/father/grandfather won’t be one of those ending his days in the ICU.