end of life decisions

Choices in Dying? Not without education and preparation

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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

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.

How will I die?

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The question is not if we are going to die, but how we are going to die.  Too often our own fears or misconceptions keep us from having this discussion.  We then run the risk of making the decisions that are not congruent with our vision and wishes for a good death.  Therefore, timely, compassionate and honest education about the natural process of dying is critical to making difficult end-of-life decisions.

“How will I die?”                                                                                                                                                                                                         As patient or caregiver, do you know you can and should ask this question?                                                                                                As healthcare provider, do you have the language and comfort to respond to this question?                                                                  We all share responsibility in making sure we can navigate this difficult conversation.

It’s important to understand how an illness changes over time, and recognize the natural wisdom of the body at it approaches the final months and days.  That will help promote comfort and identify when it’s appropriate for aggressive treatment that may be focused on cure or stabilizing the disease, and when it is best to focus on aggressive comfort care only.  When we don’t know or ask is too often when a person ends up one of the 20-30% who die in an intensive care unit.  When we don’t know we may inadvertently push interventions or even food that creates more discomfort or even hastens death.  No one likes to be surprised or left with the devastating thought, “If I had only known…”.

Find out about the status of any disease, the benefit or burden of proposed treatments and the realistic goals of care, and weigh that against what the person describes as his quality of life.  Illness is a transformative process, so goals and perceptions can naturally change over time.  Communication over the course of illness is always the key.  Making any decisions based on fear or lack of information can carry a high cost physically, emotionally and financially, so it’s not just your right, it’s your responsibility to get the information you need on which to base your decisions that match your values, beliefs and personal goals.

Please refer to my free downloadable article “The Missing Piece in End of Life Decision-making” and the lists of questions to ask both your physician and your family to help you navigate this journey.  This site also contains other resources that may be of benefit.

www.pathwayseol.com