Losing a loved one is one of the hardest things to experience in life. All signs may indicate that the end of a life is near, yet it is so hard to accept them.
Most typically, people experience the death of parents late in life. There are exceptions of course. Tragic accidents or fatal diseases intervene with the normal cycles of life. For those experiences, the principle need is to focus on coping strategies. Helping people when the shock of death comes too early is a profound challenge. Every single circumstance is different.
But there are some commonalities we all share when it comes to aging parents or grandparents. We know they are not going to live forever. We sometimes see the decline, yet focus on the good signs and hope the bad things hold off as long as they can.
Often there is some incident that triggers the process toward actual death. It may be some shift in health such as a heart issue or surgery. Yet something as simple as a fall can undermine a person’s health.
Recently that happened to a close associate of mine. His mother fell in the middle of the night and her equally aged husband did not notice. What followed was a series of stays in different hospital facilities and nursing homes.
There is a harsh reality afoot with people very aged and in a severe state of decline. Hospitals are chartered to help people get better. They reserve the right to determine if that is happening. There are broad patterns that affect these decisions. People experienced with the dying come to recognize whether the trend is toward better health or whether the symptoms of an accident or illness are likely insurmountable.
The protocols of this decision-making can seem confusing to family members or those chartered with caregiving. The legality of prescribing certain medications, for example, is often determined by the prognosis issued by the presiding physician.
Then there are the more radical decisions to consider. Will a surgery help mom or dad survive longer, or is it just a desperate attempt to extend their life?
Meanwhile, the patient sometimes vacillates between wanting all that rigamarole and perhaps not putting up with the intrusions. This can seem like they are giving up, or losing hope. But in truth, some people come to grips with their situation faster than their caregivers.
Yet that’s not often the case with people suffering pain. Their decision-making abilities are directly affected by their pain tolerance. That’s where it gets difficult for the hospital or other facilities to make decisions that please the family. Either the patient gets so doped up from painkillers and can’t converse, or they grow agitated from lack of treatment and just want the pain to end. Even death becomes a desirable option.
There are relationship issues to confront as well. A temperamental parent can be a daunting opponent when it comes to end-of-life decision-making. If there are unresolved or dysfunctional relationship issues between parent and child or siblings, the end-of-life process can become complex and tense. Blame gets tossed around. Insinuations made. Guilt enters the picture. No one can find peace or balance. The parent becomes Ground Zero for family conflict.
Usually, there’s one sibling or one person that does most of the steering through an end of life journey for a parent or grandparent. Yet that leadership role can generate friction too. It can happen that parents will play one sibling off the other in order to gain sympathy or hedge the bets. When those parallel decisions work against the medical advice of the presiding doctor and the presiding sibling, things can get really confusing. Or angry.
Palliative care versus hospice
Sometimes medical staff will seek out the primary decision-maker(s) for discussions about palliative care or even hospice. Palliative care is defined as follows: a multidisciplinary approach to specialised medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness—whatever the diagnosis. The goal of such therapy is to improve quality of life for both the patient and the family.
But quite frequently, palliative care has the goal of keeping the patient comfortable leading up to the actual process of death. When death is likely imminent due to any number of signs related to disease or debilitation, a transition to actual hospice care occurs.
Hospice removes most life-giving supports and acknowledges that the patient is indeed dying. This can be an extremely challenging decision for families to make. But there are good reasons why hospice is entered as a care strategy.
Having worked with both my parents and my wife in both palliative and hospice care situations, I can assure you that the differences are not so distinct or profound as they might seem. I am fairly convinced that the only reason the terms differ is to ease the transition for family members. The term palliative is designed to help them come to terms with the fact that their loved one is indeed dying. When the wise female physician pulled me aside the day my wife was unable to move from the table where she lay, and counseled me that palliative care was likely the next step, I knew what she was saying.
In my mother’s case, she had been directed home from the hospital because there was, n the doctor’s words, “nothing else we can do for her.” In plain and simple terms, a hospital is medically defined as the place where people go to “get better.” When it is determined by the hospital that a mission of that order is not likely to be fulfilled, families are often asked to move their loved ones to another facility, or to simply take the patient home. Hospitals do not like it when people die under their care. It does not look good on the record sheets.
My mother was consigned to palliative care following an attempt at chemotherapy to treat her pancreatic cancer. The treatment was too hard for her to take. It put her in the hospital for a few days. Then the doctor came by and told me that they were done treating her. She was able to get home and we hired caregivers. All our family visited during a three-day period and she was happily able to see nearly all her loved ones.
But then she had a stroke on a Sunday evening, and by Monday morning, the case was clear. Her ability to swallow had been destroyed. The decision to enter hospice care was defined by that condition. Within a week of entering hospice, she passed away peacefully at home. Her husband and immediate family were there with her. And while it was sad to know that she was gone, there was great closure and peace that came from that.
Hospitals try to avoid keeping patients until they die. It’s simply bad for business. And hospitals are a business. That does not mean hospitals can necessarily avoid death in their patients. Plenty of people die in their hospital beds. Death is simply unavoidable when the human body and mind have had enough trouble dealing with pressure and failure.
Life comes to an end in one of three ways; natural, unnatural or somewhat assisted. A natural death is what we all seem to desire. That’s when people pass away of so-called natural causes. That would be heart failure in many cases, or other organs. There are many ways to die.
An unnatural death is typically the product of overtreatment. That would be too many surgeries in many cases, and not enough energy to recover. From what I’ve read, that process and occurrence is an all-too-frequent occurrence in the American health care system.
I’ve watched my own family members anguish over the merits of yet another surgery for my father-in-law. Deep down I knew it was fruitless. But the patriarch of a family is not something people give away easily. Never mind that he’d already skirted death when he collapsed face first into a pile of sawdust while sawing wood in his own backyard. His wife woke him up that day. But from there, it turned into a series of heart operations, kidney problems, weight loss and finally death in the hospital. None of that was an easy choice for the family to make. It was deemed necessary as long as he was alive, to keep him alive. But whether it was absolutely necessary to keep him alive was the question everyone avoided.
Almost all families face that type of decision sooner or later. No one said dying is easy. But we tend to make it much harder than it should be.
Prayers for dad
My father passed away in a hospital bed six months ago. He had fallen in the middle of the night and broken his hip. His caregiver called emergency for the umpteenth time and they carted my dad off to the hospital.
Everyone knows that a broken hip is a tough injury for any elderly person to sustain. My father already had an injured arm from a previous accident. But mostly he’d had a long time dealing with the effects of a stroke suffered back in 2003. He outlived my mother by ten years and we kept him in his own home with caregivers. The diagnosis to do surgery was his decision.
The diagnosis to do surgery for the broken hip was his decision. I let him make it because even though I was an executor of his estate with Power of Attorney for health care, he was still lucid and capable of deciding for himself whether to live with a repaired hip or die from the effects of the injury.
He lived another four days and saw all four of his sons during that week. Then he passed away quietly in that hospital bed. I arrived on a Saturday afternoon to a room with quiet music playing. His blanched figure with open mouth lay on the hospital bed. I kissed his forehead as I had done many times in fifteen years of taking care of him. Then I knelt and said a prayer next to him even though he was not necessarily a praying man.
I thanked him for his love over the years even though he lost his ability to say it. I said thanks to what I know of God for believing in my ability to take care of my father. It was tough as hell, and definitely worth it.
He was dead, but his memory just as surely came alive in the days that followed. There was nothing medically I could have done to change that outcome. There seldom really is. Death comes because it is meant to be. It gave me peace to know that he no longer had to live without his voice, and his golf clubs, and that wandering spirit squelched by his confinement to a wheelchair all those years. He dealt with it pretty well, and like an SOB at times.
The art of dying
But he dealt with it. And it was our job now to deal with his passing. It all took so long and happened so fast. That’s how death works, after all. And sometimes you should not fight it. That is the art of dying.
There’ll come a time when all your hopes are fading
When things that seemed so very plain
Become an awful pain
Searching for the truth among the lying
And answered when you’ve learned the art of dying
––George Harrison, The Art of Dying