body near death

Doing it Right – How the Experts Manage their Own Dying

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We were eight very experienced hospice workers, surrounding the bed of Kim, our beloved friend and former hospice co-worker, who was now close to death. One would think we were a dream care team, and yet, there we were, arguing about her care.

“She needs mouth care.”

“No, she will choke on any water from that swab!”

“We need to turn her every 2 hours to prevent bed sores!”

“No, she is so close to death it will be uncomfortable and disruptive.”

“She is moaning and needs pain meds.”

“No, she looks comfortable – she’s just communicating with us or those we can’t see.”

Although this was our area of expertise, we couldn’t agree on the best care. We shared an unspoken fear of letting our friend down, of not providing the care she deserved to assure the most comfortable and dignified death.

“Doing it right.” While based in a loving intention, it seemed to be a moving object I and my esteemed and experienced friends could not fully embrace at the same time, despite being the “professionals.” We now better understood what this must be like for the hundreds of patients and families we had served, confidently providing direction and reassurance with patience and compassion — qualities we were now lacking for each other!

Our ego is attached to this need to do this right. It makes us wonderfully, albeit painfully human.

Kim’s partner had been busy for months, coordinating treatments, support, healing ceremonies, care giving schedules, and providing the right foods, supplements and holistic care. She fought to maintain a positive outlook and push back any fears or negative thoughts that might impact either care or outcomes. She committed to being superhuman in her tireless efforts.

Finally sitting down in total exhaustion, she exclaimed, “I finally realized, I’m not going to get through this looking good!” What a freeing statement! We laughed and cried with this truth.

Let go of the “shoulds.” Simply watch the response of the person you are caring for and let that be your guide. What might be needed at noon may be different by 2 p.m. It’s OK.

Recognize that everyone is grieving, and everyone is frightened of not providing the best care.

The key is the love we put into every action.

I could imagine Kim’s spirit looking at us all, both grateful and amused.

There is no perfection. There is only love.

And that is perfect.

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

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“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….

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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