Dealing with the loss... when death is no where to be seen.

The loss of a loved one is never easy. 

It never seems right nor fair.  

However when death follows a long arduous trial by a disease such as cancer, emphysema, heart disease, or kidney disease... it seems almost a welcome end to the suffering, an end to the pain.

Similarly, when death follows from a massive trauma in which our loved one is maimed and disfigured... death brings relief and the knowledge that no indignity will further disfigure the beauty of our loved one.

But what happens when death is rapid, and yet nowhere to be seen?

What happens when our mother, father, brother, sister, cousin, uncle or other relative lays in the bed on a ventilator... pristine and beautiful, body untouched by the ravages of disease nor the disfigurement of injury?

Recently I cared for two patients, a young man and a young woman who both suffered hypoxic encephalopathy... no trauma marred their bodies... no disease ravaged their lives... the circumstances where at once rapid and fatal, but through our technology, we were able to restore cardiac function.

It fell to me to explain to the family of each of these patients that your son... that your mother... who looks so beautiful and pristine save for the tube coming out of her mouth, is dead.

No shadow over her bed. 

No scars to make his death heroic.

No epic story to make us rejoice at the release of death.

Just two perfect bodies, devoid of the "person" who used to inhabit them, laying in the bed.

And two beautiful families dealing with death... when death is nowhere to be seen.

Who Builds These Things Anyway?

One of the greatest truisms that I have encountered in my medical career (palliative or not), is the fact that most hospitals are designed by people who have never been a patient, much less seen one. Neither did they ask a doctor or a nurse. 

A particular grievance that I have is the design of bathrooms. Most hospital bathrooms that I have encountered are made small (think the smallest airline bathroom you've ever seen) and would never fit anyone with a walker, cane, wheelchair, much less a person of "size".

If there is a bathroom sink... it is the size of a small finger bowl and has - of all things - foot pedals to work it. Please remember your last hospital visit and what you wore on your feet.

Secondly, from a more palliative standpoint, there are no areas in which talking with families in privacy is possible. This past week, I held family meetings about serious end of life issues in a hallway, staff lounge, and at the elevator lobby. There needs to be a movement to provide private spaces for the talk that is necessary to discuss all aspects of a person's medical care.

We're not all on the same page...

Here’s the scenario: mom is clearly at the end of her life. She has been brought into the emergency room for care. She has no advance directives and is unable to speak for herself. There exist two choices for mom’s care – the Intensive Care Unit for aggressive management, possibly with ventilator support, or palliative care with the focus on comfort care.

There are numerous children, family and friends involved with mom and they are getting input from every source. Someone knows someone who has the same disease process as mom and they had a round of chemo and are cured of stage IV metastatic disease. Someone knows someone who is a doctor or nurse and they have a host of recommendations to follow not having seen the patient.

The family is confused and at odds over what to do.  No one agrees on what mom would want or what they want for mom. Dad is looking at his bride of over 50 years and does not want to entertain the idea of losing her but feels she’s had a good life and wouldn’t want aggressive treatment. The son thinks that in not doing anything aggressive is akin to murdering mom. The daughter does not want her to be in pain. Another daughter is hoping for a cure. No one speaks to the daughter who lives out of state but is the most vocal in what she wants done for mom. And then there are doctors who will offer a chance at some curative therapy in the hope and belief that mom may be of that very small percentage of people who at this stage in the disease will have some degree of remission. There are also doctor’s who will not tell the family that their mother is at the end of her life maybe because they can’t let go of trying to be curative or maybe they are just afraid of having the discussion about death and dying with the family. The family is overwhelmed, confused, angry, sad, grieving. They are fighting with nursing staff and each other.

Here’s where we come in, our first step is to recognize we can’t cure the patient’s disease or the dysfunction of the family. We set up a family meeting to help provide the family with all the information they need to make a decision regarding the goals of care for mom and to help them focus on quality of life. Most times we are able to help the family get on the same page. And sometimes we are not able to do so. We have yet to come across the perfect family. Every family we come across has some degree of dysfunction.

Sometimes the family has members who are in such denial or have such a strong fear of losing their loved one they will continue futile care and continue artificial means to keep their loved one alive – even at the cost of quality of life. Often, the unreasonable family members, the angry family members remain as they have always been prior to mom’s illness – unreasonable and angry and they frequently stand in the way of family decisions regarding care.

The lesson here is to make sure that you clearly speak to your family about what you want should you be unable to speak for yourself. Appoint a health care proxy who you know will follow your wishes and will focus the care you receive on the quality and comfort level you would want should you not be able to speak for yourself. 

Donna Willenbrock, BS, MS, ANP

On the need to look down...

A transformative experience is one in which your perception of reality is changed forever. One of mine was during my training (Pulmonary medicine and Critical care) for critical care. It was a long holiday weekend and I had been on call in the hospital for 5 full days... these were the days before hour limits to Doctor's work... and we were doing rounds in the ICU my last morning on call.

As I stood with my rested and well groomed colleagues, I noted that while everyone was looking up at the monitors above each patient's head, and at the charts at the bedside, and closely scrutinizing the mechanical ventilator at the side of the bed... no one was looking at the patient in the bed. The person who was sick was lost amidst the sea of wires, tubes, academic quotations, calculations and the need to beat death.

I slowly walked to the bed and placed my hand on one of my patient's chest... feeling the air go in and out of him. I never saw the world the same way again.

The simple act of looking down... looking away from technology and towards the humanity, towards the spirit itself will change you. In time... it will change the system.

Look up, see the technology that allows better life, but then look down and see the person the technology was meant to serve.

Quotes from the Front Lines of Palliative Care I

Anyone who has done the "work"of palliative care can come up with quotes that are memorable, either that a team member says or that a patient says. Some funny, some poignant... these little mental "truth bites" are the sound track of our lives as the facilitators of dignity for our patients. Here now a list to get you started:

1. "Hi we're from Palliative Care... and we're sorry" This is unfortunately not as funny as it would seem. Often our team is called in when situations are out of control, either from the dire emotional stress of the illness or the perceptions of neglect from a stressed family. Nine times out of ten we can remedy this situation, but there are those times we go up in flames.
2. "I just want to know that I'm doing this right... "  A quote from a woman dying of ovarian cancer. We are all very proud of being in control. I believe that the biggest emotional hurdle we face in our work is the fact that the person faces a betrayal of their sense of identity, but from their own bodies. This woman was a type A control person, who always overachieved, always won, and always did everything right. In the end, her greatest concern was that she was "doing her dying" right.
3. "No one gets off this planet alive" Reality check for those times when families and/or physicians get the idea that our tragically ill relative will pull through the 50 or so illnesses that they are battling.
4. "No CPR Doc, when this tire goes flat... throw it in the dump!" New York truck driver with end stage colon cancer reaction on being approached for Advanced Directives. He obviously adamantly refused the offer of death-extending CPR.
5. "You think better sitting on your ass than laying on your back" Same truck driver when asked whether he wanted to have the family meeting while sitting in a chair or laying in a bed. This is truly a multi-situation piece of wisdom when you stop to think about it.

It's OK to talk about the scary stuff

When I go to speak to people at the bedside, or when I see people in consultation in the office I often ask, "how do you feel?" Most of the time I get the usual litany of physical complaints, but sometimes I ask that question and I get answers that go beyond the physical.

"I'm tired" is one of those answers that I often hear... what is interesting and disturbing about this is that it is obvious that they are talking about more than physical fatigue. "I'm tired" has become code for "I am done and I want to talk and no one wants to hear it".

Conversations about how it feels to be very sick... and even thoughts about dying can be disturbing to hear, especially if it is a loved one and you really don't want to hear it.

I suggest that if you care for someone who is chronically ill or dying, listen to what they have to say. Let them complain, let then cry, let them tell you they can't go on. These are not evil thoughts, these are not suicidal thoughts, these are the thoughts that are silent... unspoken inside the mind of your loved one. These thoughts... unspoken... will fester inside and cause real damage, real separation and real sadness.

Making sense of medications near the end of life.

As in all things in life, the end of it should be tinged with a little common sense.

One of the silliest things I have do as a Palliative physician is to sift through the lists of medications that my patients are on and make the useless ones go away.

For instance, what sense does it make if you are suffering from cancer to take cholesterol lowering medications? Not only is it unnecessary, but they can interfere with chemotherapy and can certainly interfere with the enjoyment of life.

My advice to patients and their families who are in this situation, is to review the medication list with their physician and try to exclude anything that will not benefit them in the "here and now" and for comfort sake.

What good is the statistical chance of decreased stroke 25 years from now when the medications to do that make you miserable or worse, shorten your lifespan interfering with your chemo?

With medications such as the lipid lowering agents, daily aspirin therapy, and the like, once you achieve clinical remission or cure, then you can resume all those medications for long term preventative care.