Choices in Dying? Not without education and preparation

Beam me up now, Scottie sounds like a nice, quick and clean escape from life.

 

Admittedly, I’ve thought this myself despite my experience of providing comfort during the dying process and bearing witness to beautiful deaths. How will I really feel and what will I choose when faced with my own death? My 40 years of observation in this field tells me that while I think I know that answer, I may not, but what I do know is what will be needed to help me make end of life choices.

 

Facing dying is a dynamic process, and what we fear or believe now often changes prior to the moment of death. This process is also transformative, for ourselves, and those we love. So how do we – and can we really – prepare for that moment?

 

Advance Directives are limited and often fail us for a variety of reasons. Will you be prepared or protected by a reimbursed visit to talk with your doctor about the use of machines or a hastily completed directive done at the hospital? Probably not.

 

Why? Because 1) we are humans who, when facing death, find out we aren’t ready to let go, and 2) we are often not informed of the markers of our decline or told directly that death will arrive within months, weeks or hours. When we are not given this information, we assume the fight is still on and the battle can be won. Therefore those advance directives we filled out as guideposts are mired in the heavy fog of poor communication and information at best, or misinformation and dishonesty at worst.

 

In my years as end of life educator, I’ve observed that the key to making the best choices is that they must be truly informed ones. We must know what to expect regarding disease progression, the management of changes over time, and the dying process. Talking about the dying process is particularly omitted in today’s conversations.

 

It pains me to observe that most healthcare practitioners, and even new hospice workers, are not trained to understand and talk about the dying process. For those we serve, this omission contributes to panic, the inappropriate utilization of interventions and unprepared deaths. This is why one third of those under Medicare spend their final 10 days in the intensive care unit. This is why increasing numbers of people with cancer are receiving chemotherapy 2 weeks before they die.

 

They didn’t know they were dying, and they didn’t know they had choices.

 

We talk around death in the guise of preparing for it. Some will intellectualize the process and others hope signed forms will save them from an unwanted scenario. Some get lost in philosophizing to distance themselves from the physical reality of dying. Some focus on their spiritual beliefs, finding comfort about what they believe does or does not happen after their body dies.   But what do they have to go through physically to get there? That’s where the biggest fears and biggest gaps in knowledge reside. It’s these fears that contribute greatly to the desire for aid in dying, and that’s why we must talk about it.

 

My mission is that end of life decisions not be based on fear, misinformation or lack of information.   When we have the proper knowledge, we make informed choices, and fulfill our right of autonomy and self-determination.

 

We all have work to do to improve how we prepare for death:

 

You as consumer must be willing to ask the difficult and necessary questions. We in healthcare must make sure we are training folks to answer those questions honestly and compassionately, or be able to refer you to someone who can. We must paint the picture for people about the short and long term benefit and burdens of potential treatments and not just provide an abstract with vague brush strokes.

 

If you have several medical issues, knowing the actual cause of death of each one may allow you to choose how you want to die. For example, dying of anemia or kidney failure may be more manageable or comfortable than dying of certain tumor growth or advancing dementia. The omission of this information leads to uninformed choices. You need to be clear in each step of the process how you individually define quality of life and then create goals with your provider that are actually achievable.

 

I am acutely aware that the choices I make don’t just impact me. They will impact my family emotionally, financially and spiritually. It will impact their bereavement and how they will approach their own dying.

 

For me, death with dignity is being prepared, being supported, and getting exceptional comfort care from my providers. It also means seeking a state of grace where I gratefully receive the loving care of my family and friends, while being in my own bed with my dogs still competing for my pillow. What does it mean for you?

 

Death with dignity can happen with or without a hastened death.

I have no issue with choices in dying as long as they are informed. Knowing there is choice has provided a comfortable backdrop as people learn about managing their disease. Current data reveals that in the end, many of those who obtain a prescription for a hastened death never use it.

 

It’s not my job to tell you what you should or should not choose regarding your own dying. It’s our job in healthcare to make sure that you never have to say, “If I had only known….”

 

Education in dying before choice in dying.   We have work to do

I want to die in my sleep….but you shouldn’t.

“If I had my choice, I’d rather to die in my sleep”

Pretty common preference, right?

Here’s the good news:

Thanks to the wisdom of our body and how it shuts down to take care of you, that’s exactly what happens at the end of an illness or old age.

Over time, the individual has less and less energy, sleeps more and more, until he finally slips into a coma. While in that coma, the body continues to shut down and die. Depending on the illness one is succumbing to, that coma may last seconds or weeks.  So most people die in their sleep, as they wished!

Now here’s the perplexing news:

Although this is something we hope for ourselves, we often don’t trust or honor this process when it is our loved one that is dying.

The reasons can be simple: not understanding the dying process, the pain of letting go, the fear that there is something we need to do, or not do, to keep our loved one with us a bit longer.

When terminally ill individuals don’t want to get out of bed, or when they sleep more often, many concerned families declare they are over-medicated or perhaps giving up and willing themselves to die.  This can ignite a desire to stop a process they believe is hastening the dying.

There is also talk about ‘conscious dying’ and the belief that using any medications as death draws near will rob that person of final communications.

There is fear that medications are hastening death.

These fears must be acknowledged and addressed. It’s not an easy balance:  we want our loved ones comfortable, but worry about over-medicating. We want to honor the natural process of dying,  but we miss the conversation and hugs as they sleep more.  In my 40 years as a nurse, I have witnessed very few ‘Hollywood-type deaths’ where the person could say a few words just before dying. Usually they are in the coma, still able to hear you and feel the energy you bring to the bedside, but unable to respond beyond an occasional grasp of fingers, or a single tear of good bye.

Navigating the dying process and comfort needs requires the compassionate guidance and support of those trained in palliative and hospice care.

There are many individuals who will experience no uncomfortable symptoms at all and never take any medications in their finals days, yet the gradual increase in sleep occurs just the same. This is the natural process of the body shutting down. The presence of any symptoms depends on the illness and medications are there if needed to keep the person comfortable, not ‘knock them out’ or hasten death.   No one wants to think they or anyone they love will experience discomfort before death because needed medications are being withheld simply due to lack of understanding.  It’s that fear of physical suffering that can cause folks to say they would prefer a hastened or assisted death.

Know that increasing sleep is a natural part of dying.  Honor that process.  Provide necessary meds to promote comfort.  Surround them in your love as they slumber.  You are committed to the comfort of your loved one, just as you hope others will be committed to your own comfort when your time comes.

If you want to die in your sleep, let them die in theirs.

 

For more information about the dying process-  See “Dying to Know – Straight Talk About Death & Dying” on this website.

They are not dying because they are not eating….

…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.