end of life decisions

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

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

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