Contemplating Dignity in Death

A friend called me at the end of the week, upset about her mother's struggle with late stage Alzheimer's.  We talked for some time about various aspects of her mother's care.  At the same time, I've been closely monitoring my Aunt's health which is rapidly failing.  In both cases, there has been difficulty getting the need for hospice care to be accepted by one family member or another.  In both cases, an immediate family member has taken on the majority of the care.  These two situations have led me to contemplate the role of dignity in a person's death for the past several days.

(First, let me be very clear.  For this post, I am going to be speaking in terms of providing palliative care and not artificially extending an individual's life.  I am not speaking of the Death with Dignity movement which advocates for physician-assisted death.  I personally do not have a problem with a person seeking to end their life when facing a terminal diagnosis.  It is just not the focus of this post.  Additionally, this post is not calling out the behavior of anyone involved in the care of the individuals mentioned in the opening.  These are just my thoughts which have been percolating as these two individuals approach their deaths with their families by their sides.)

You may have heard the concept of allowing a person to die with dignity.  The term may feel loaded but there are some pretty basic concepts.  Essentially when we allow a person to die with dignity, we're actually allowing for two things.  First, we're allowing the person to be involved with the decisions about their care.  Second, we are doing things which prevent the person from being subjected to indignities.  If we can achieve those two criteria, we can help the person die with dignity.

When a person is facing the end of their life, it is still important that we allow the person to be involved with the decisions about their care to the maximum extent that they can be engaged.  If they cannot be engaged and decisions about their care must be made by someone who has medical power of attorney, then that individual should be evaluating each treatment and each medical decision through the lens of "what would she want"; not "what do I want for her."

There are many times when an individual remains mentally competent as they are dying.  They may deliberately choose to not seek invasive or extensive treatment which may extend their life.  It is their choice to make and it should be respected.  However, respect towards the individual should also be paid on the little decisions.  For example, a patient may be shaky and weak and unable to easily feed himself.  To respect that person's dignity, we should not take the spoon or cup from their hands and take over the feeding activity without first either offering assistance (and having the offer accepted) or receiving a request for assistance.  The action, no matter how well intentioned, demeans the person by indicating that their desires are not relevant to their care.

How can we respect a person's dignity by allowing or encouraging their participation in their care?  Here's a short list:

• Ask - Ask if she wants her blue gown or the green one.  Ask if he wants assistance to walk down the hall.  Ask if she needs a hand fixing her hair or if he needs help brushing his teeth.  Ask about anything and everything.  Ask about what they would want should their disease prevent them from making decisions in the future.  Ask what they want done with their body when they die.
• Listen - When you ask a question, stop and listen.  Don't move the moment you hear a response but listen to the response.  You might have thought they wanted the green and find that the blue gown is today's preference.  Their diagnosis will rarely render them suddenly incapable of making a decision.  Invalid is not the same as infant.  Even Lyn has opinions about what she wants or doesn't want.  She should be able to express them for as long as possible and we should respect them.
• Act according to the person's desires - If the person's desire does no harm, then do as they ask.  If they want a piece of pie for lunch, then let them have a piece of pie for lunch even if you were hoping to save it for yourself.  So, that seems pretty obvious, but there's a gray line with which some people may struggle.  What if the person is asking to cease a medical treatment?  What if they don't want to have any more chemo or another surgery and refuse treatment?  They're going to get sicker.  Isn't that doing harm?  It is their choice to cease treatment and allow the disease to take its course.

The second aspect of allowing a person to die with dignity is where compassion comes to bear.  When we seek to remove the things which cause indignity, we look for those actions or interventions which will remove pain, shame, or embarrassment.

• Manage Pain - If the person is in pain, provide them with the medications needed to help ease the pain.  Physical contact can also provide comfort.  Hold their hand.  Provide light massage or even brush their hair.  
• Provide Compassion - Shame and embarrassment may come up as a result of the person's increasing inability to care for him- or herself.  Smooth out those moments when they may no longer have control over their body.  If they vomit and miss the pail, assure them that it's OK even if you are holding back your own gagging reflex.  If they are not able to control their bladder or bowels, help them with proper undergarments and hygiene to stave off an infection.  Never let the person feel as if they are an imposition or a burden to you.  It is not their fault when these events happen and they may be mortified at their lack of bodily control.  The compassion is not just about the big messes.  It also is needed in the daily care of the person.  If a person always was well manicured, keep up their nail care.  Even if they didn't love a particular shade of red, at least keep their nails neatly trimmed.  Make sure they are regularly cleaned up and their hair is tidy.  Think about how refreshing it is for you when you step out of the shower.  Help the person feel put together and clean too.  

Death is not always a sudden event.  It can be a slow process.  Allowing death to happen while helping maintain the dignity of the person who is dying is an act that honors that person.  It is an act of love.  It may be deeply painful to let the person go but it is an act of kindness to do so.  Fighting to keep the person alive because you are not ready for their death is actually selfish and not a battle you will win.