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The Dying Process – Why we Need to Talk About It

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The question is not if we are going to die, but how we are going to die.

Encouraging healthcare providers to ask about and document end of life wishes is at an all time high, yet we are still not offering the training or support to talk about the most critical aspects – expected disease progression the natural process of dying.   If we can’t talk about it, how do our patients prepare for it? If they are not prepared for it and understand the options for care, and how can we say they are making informed decisions?

When facing the end of life, people are naturally scared. When decisions are based on this fear, or on lack of information or misinformation, it can result in devastating physical, emotional and financial consequences for the patient and family alike. To avoid this, we must do a better job in providing education about the dying process with honesty, compassion and simplicity.

If we as healthcare providers do not explain the natural course of the disease and the dying process, if we do not tell them how to respond to the expected changes to assure comfort and prepare for closure, if we do not alert the patient and family that death is approaching, we are doing a disservice through omission.  Grief of loss is hard enough, and can be worsened when there has been no preparation or forewarning.

The following unfortunate experience still happens too frequently:

It was bad enough that Gary was feeling the pain of only just understanding that his beloved wife was imminently dying of cancer. His pain was further exacerbated by learning too late that his best intentions of pushing food only created more discomfort and conflict for the love of his life.  “If I had only known,” was his lament, one that is too often shared by patient and family alike.

 

Due to the wisdom of the body as it prepares to shut down, many natural processes kick in to promote comfort.  When families understand their loved one is dying, when they understand the wisdom of the body as it shuts down, they are more likely to make decisions that honor the process of dying in addition to avoiding residual fear, anger and guilt.

 

For those patients with co-morbidities, it may also mean choosing how they want to die. Knowing the expected disease progression and dying process for each disease is essential for informed decision-making. When advancing dementia is evident, how long do you continue dialysis? If your patient with newly diagnosed pancreatic cancer is also experiencing increasing congestive heart failure, what is the benefit and burden of treatment and impact of their quality of life? What about treating a third bout of penumonia in a year to a nursing home resident with Alzheimer’s disease, who is bedbound and also has kidney disease? In any of these scenarios, which cause of death is easier or preferred for that person, based on their values? Each family needs the chance to understand and to decide.

 

We must all face the fact that ultimately, dying is not an option. We cannot avoid it by not talking about it. How we talk about, prepare for and honor the dying process is our responsibility.

 

 

To learn more about the physical and psychosocial changes related to the end of life journey and dying process, visit this resource page for my book and DVD’s – http://pathwayseol.com/videos-books

They are not dying because they are not eating….

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…they are not eating because they are dying.

The decreasing appetite and subsequent weight loss associated with terminal illness or natural end of life is an emotionally charged issue.  Because we associate food as a necessity for health and well-being,  we also associate the act of providing this sustenance with nurturing and comfort.  That approach  changes when managing advancing illness and age, and it’s hard to wrap our heads around the idea that pushing food may now be creating more problems.

For the purpose of this blog, I am assuming we ruled out reversible causes of weight loss such as nausea, mouth sores, pain, poor eyesight, cognitive changes, constipation and the like. Of course we want to address and correct those issues.  I am addressing the natural changes in appetite in advancing illness and age.  

A lack of appetite is often a natural and normal part of the body beginning to shut down.  The desire to eat and the ability to process food will diminish over time. Depending on the particular illness, this can begin days, months and even years before death.

It’s hard to see your loved one losing weight and growing weaker.  It can be scary.

A common, albeit incorrect belief,  is that the person is starving to death.  As a result of this fear, families may push spoonfuls of food into the mouths of their protesting loved ones.  Nursing homes and hospitals can often initiate artificial feeding.  Because we all want what is best for those we love, we need to know that  forcing food when the body says ‘no’ not only creates conflict between the individual and well-meaning provider,  but it can actually create discomfort, increase physical complications and yes, even hasten death.

This is why end of life education is critical.

The body has it’s own wisdom and to promote comfort we must understand and honor that.

Despite our best efforts, Alice’s cancer was not responding to her chemotherapy and she was quickly losing weight and muscle mass.  She was so thin, we could see the tumor growing in her belly.  Using its natural wisdom to protect her, her body released a chemical that shut down her desire to eat, resulting in a process that promotes comfort by releasing our natural endorphins.  That way, Alice was comfortable and did not experience hunger.  

Not understanding this process at the time, the healthcare team utilized what was thought to be the best medical judgment; we provided total nutrition through her veins.  

The next day I was on duty, I saw that the tumor had tripled in size.  

We had only fed the tumor.

We had done nothing to promote her well-being and in fact, increased her discomfort. 

There is a time and place for medical interventions.  They must realistically match the status of the illness and be an achievable goal.  Over a hundred studies have shown us that in the very end stage of an illness such as dementia and stroke, tube feedings may actually hasten death.   In addition to loss of appetite, those individuals may begin to lose their swallow or gag reflex.  They can choke while eating.  Although we cite risk of aspiration as a reason to place a feeding tube, its use can actually increase the likelihood of aspiration pneumonia, because when the stomach is overfilled, the fluid backs up and then goes into the lungs.  Other risks include the surgical insertion of a tube and complications from the decreased mobility when hooked up to a tube feeding.

You want to best care and don’t want to feel you did too little.

You also don’t want to compromise their quality or quantity of life.

The dying process is still not taught in many medical and nursing schools.   Your best resource is a palliative care specialist or end of life educator who can talk about the natural and normal changes a body will go through over the course of a terminal illness. With this understanding you will focus on that which honors these changes and promotes comfort, thereby providing the best care.

So what can  you do now, that feels as loving and nurturing as when you made their favorite foods?

Comb their hair, provide a gentle massage of the hands and feet, look through old photographs and reminisce, enjoy music together. Feed their spirit.

That kind of nurturing is never contraindicated.

 

For more details about how the body changes, go to www.bookaboutdying.com or the books and videos page on this site.