Palliative Thinking...

April Fool's Day...

2010-04-02T23:50:00.004-04:00

A phone rings at five am, "Doctor, your patient just died... just wanted to let you know." After 25 years of dealing with phone calls like this, you roll over process the name and get back to sleep. There is a distance that doctors are trained to keep... a distance that protects them yet isolates them. Part of my journey has been the destruction of that wall, that distance that numbed me from death and thus from life itself.

This year, April Fool's day was meant to finish the breakdown of that distance.

My father was in the hospital in critical condition, my mother had eye surgery and was having difficulty getting clearance due to her end stage Sarcoidosis.

It isn't until I walk onto the Palliative unit and enter the room that I realize the enormity of that simple early morning conversation.

My patient... a woman I have helped fight back pain for 4 years, who has survived 10 years after a diagnosis of end stage colon cancer has died. I sat with the brother and my nurse (who btw I noticed was treating me as family not doc) and we talked about what a great woman she was and how just plain cool she was.

I missed her and I cried.

Several hours later I received a phone call from the ER about a woman who was one of my private patients... a 53 year old woman had just had massive cardiac arrest and died. I barely considered her a patient. She was that healthy... and now she was dead, oh, and could I please come and sign the death certificate.

After several minutes of stunned silence I put down the phone... and I cried.

“Death, the one appointment we all must keep, and for which no time is set”

Charlie Chan

Long Drives...

2010-03-24T22:40:00.004-04:00

There is a young man whom I have cared for who has ALS (Lou Gehrig's disease). It has come about that he has been living with this horrible illness for the last two years. Since that time he has continued to work until five months ago when his weakness confined him to home.

He worked as a maintenance man at the hospital, and he is a very popular and loved man, always laughing and making light of his illness.

As a result of this, his friends gather around him both at home and wherever he goes.

He is never alone.

His wife is a loving and strong woman who has faced the rapid decline in this young strong man whom she loves with grace and dignity, and I wish I could have met her before I did to see a smile on her face. As it is I met her when we consulted on him at this last admission... when the work of breathing became almost too much and he required a BiPaP machine and a PEG to maintain.

He is a proud man and is refusing intubation and the like, yet his demands to pull the last drop out of life are exhausting, to himself and his wife.

As I said, he is never alone, which means she is never alone either.

On consult we discussed hospice and how appropriate it would be for them to go home on hospice and he can be comfortable at home. They agreed and he was sent home for what we thought would be the last time.

The crowd of friends and family were there until the man and his wife were alone at home... when the lack of air (both literally and figuratively) that they felt drove them both to panic and call 911 for the return trip from home to the hospital.

She aged 10 years in that one night. The brave facade of the strong enduring wife replaced by the exhausted expression of a woman whose world has collapsed and she knows now... really, that she faces the end.

Upon our visit today, amidst the crowds of friends and family, she came to us from in back of the room and we discussed going to the in-patient hospice facility nearby.

She was tense as she thought things through until I looked out the window then at here and said... "It's a beautiful sunny day, why don't you take a ride out there to check it out... just you?"

At that she smiled and took the brochure and left the room, permitted to just be her, not "the wife", but just her.

At least for a little while.

A Cup of Comfort...

2010-03-21T20:27:00.002-04:00

No new revelations on this post.

I do want to announce that I am featured as the lead story in the anthology "A Cup of Comfort for Fathers", a book that has collected many stories (both poignant and funny) about fathers and their effect on the lives of their families. My Story "A few Minutes in the Shade" was written 10 years ago and details an encounter with my then 5 year old son and how wisdom does not always come from age or experience... but rather in the simple observations of a child.

This book is available on Barnes and Noble.com is edited by Colleen Sell ( a wonderful and gentle soul) and is published by Adams Media.

A Phase in the Life: Changes... Fugues... Obsessions... Awareness... and Re-Integration

2010-03-16T08:01:00.005-04:00

I've been away for a while.

Well, not really away like on a trip to the amazon or a stay at a monastery or something like that, but rather away from this blog and in essence away from introspection and observation of what is happening around me.

I think this happened for a few reasons that I outlined in the title.

Firstly, there have been some significant changes in my professional life (some that are ongoing as you'll see in the next few months) that go to the core of my professional identity. I work now for the most part for Catholic Health System of Long Island as Regional Director of Palliative Care.

This is a good thing.

However, it shakes my perception of myself as the rugged individualist who has a big practice on his own... an island unto himself so to speak.

This "sea change" in my professional career caused what I call a professional "Fugue State" in which for the last six to seven months I have gone about my day seeing patients and functioning, but feeling like a hamster in a wheel... running running and running and going nowhere. Granted I have been helping people all along and making those observations, but not truly thinking about anything other than keeping my nose to the grindstone and staying ahead of "the List".

Which brings me to obsessions... don't snicker, it isn't deep and dark (and by the way don't act like you all don't get them on occasion), yet I became in a minor way obsessed with a video game. An online diversion that took me, for the time I played it, away from feeling a part of the corporate machine and once again in control of myself in the form of my pixel self.

Where does awareness come from?

If I knew that I would set up a series of lectures and sell books on it... but I don't, I just know that to me awareness came as a thought in the night. I was awakened by the nurses on the Palliative unit and told that one of my long time Palliative outpatients was transitioning to the actively dying state. I handled it as he and I had agreed on and lay back to try and get to sleep. I then became aware of what I was doing... and why I was doing it. I became aware of all the patients who have trusted me to make their lives safer and more comfortable over the years... and of my own parents heading in that direction.

Suffice it to say, awareness has returned and now begins the process of re-integration... restoring "Me" to where I am... and how I care for my patients. Integrating my little obsessions into a healthy life, and most of all remembering to stop... look around... actually see what is in front of me... and enjoy the journey that I have the privilege of sharing with everyone in my life and with all of you.

Magical Thinking

2009-06-29T13:17:00.003-04:00

Zusne and Jones (1989: 13) define magical thinking as the belief that that one's thought, words, or actions can achieve specific physical effects in a manner not governed by the principles of ordinary transmission of energy or information.

When I went to medical school, we were taught that magical thinking was either a harmless superstition like crossing one's fingers to bring them luck, or a dangerous psychotic delusion, like stepping off a ledge and expecting that you are going to fly.

Since school, I have observed (and frankly participated in) varying degrees of magical thinking. Some lines of thought are fun and some are scary but all have at their core the fervent hope that things will be different than what they are for real.

Since my "evolution" as a physician I have been able to observe that the most ardent practitioners of magical thinking are those of us in the medical profession. It is common practice, for instance, when performing minor procedures at the bedside to disinfect an area of the skin three times prior to performing the procedure. There is no evidence to prove this, but it is commonly done... so much so that the little packets of iodine swabs used for skin disinfection have three little pre-saturated swabs.

Much of this has come down to us from the middle ages mixed with the very real concerns for public health and the provable infection control practices of modern medicine... but still curious.

Unfortunately there are two common threads of magical thinking out there that are perpetuated by the health care community.

The first one is that medicine and medicines can cure anything from cuts and bruises to severe depression. Like any good magical thought, it has it's basis the provable facts of cure from many diseases, however medicine cannot cure many of the ills associated with life itself, such as aging, self abuse such as smoking and obesity. These require the more tedious and "obnoxious" change in lifestyle.

The second (and infinitely more cruel) form of magical thinking is perpetuated by the fears and hopes of medical practitioners themselves. When a person is found to have a terminal illness of any kind (cancer, heart disease, lung disease, etc...) rarely is this information related to the patient. The severity and need for frank and honest discussion of the very real prognosis is held back in the "magical thought" of not wanting to take away hope. Often the thoughts of the practitioner and the thoughts of the family and patient become so intertwined that they begin to exist in each other's fantasy of cure, instead of the reality of treatment and hope for a good life for as long as it lasts.

I am a deeply religious man and I believe strongly in prayer and the power of hope. I have seen in my life what I perceive as being true miracles. However I have seen these miracles happen in the face of a patient that realizes that these are indeed miracles, that these cures and recoveries are the products of a higher power and not the result of crossing our fingers and rubbing our rabbit's foot for luck.

"Pal Care" and Shoeboxes

2009-06-25T20:44:00.003-04:00

Recently, my team and I were sitting and talking with a patient who was hospitalized due to severe pain from multiple myeloma. On her admission, this lovely vivacious woman was reduced to a cringing shell, praying for death.

Fortunately, we were able to positively affect her symptoms and she became much more talkative and showed us a spunky, flirtacious woman who has more life than three normal people combined.

She has labelled our team "Pal care" and I asked her if it was really that hard to say the word palliative? She laughed and said... "No silly, you guys are my pals, so you guys are Pal care".

What a great idea and one which caught us all aback, yes indeed we try to be the patient's Pal.

This lovely woman also explained to us that we now have a Pal Care shoebox.

When asked to explain, she said that everyone has a shoebox, the oncologists live in the cancer shoebox, her fears live in the stinky thoughts shoebox, and now we are in the Pal care shoebox. I cannot think of a better description of "compartmentalization".

Today, as she was preparing to leave tomorrow morning, she asked me to stay behind and speak privately to her after the team left the room.

She spoke to me of her fears... fears of death... fears of a life of pain... and fears of saying goodbye to the hospital family she has grown to love, even without knowing their names.

As I left, she touched my hand and said, "thank you for helping me deal with the stinky thoughts shoebox".

Absurdities

2009-06-14T17:05:00.003-04:00

As of this writing, I am on the eve of removing the ventilator support for one of my favorite patients in the world. I have known her for over 15 years and she is one of the few remaining patients that I continue to see from my pre-palliative care internal medicine practice. She has severe Adult Respiratory Distress Syndrome due to sepsis and pneumonia and she is near death already on multiple pressors and full support.

In her terminal episode, she has taught me many things.

Once again I was reminded that I cannot fix everything, no matter how hard I tried.

I found myself tearful as I ordered her intubated... a chill running through me and an unspoken cry of "Oh my God this can't be happening" in my gut.

I found that I had to let go... I had to let another physician - an intensivist - take over her primary care (difficult because I am a trained intensivist), because I am definitely "too close".

And I found myself today sitting with her son in her isolation room in the ICU... two grown men talking about the end of a lovely woman's life, while we were wearing green isolation gowns, yellow masks, latex free gloves, and "poofy" blue bonnets.

In one instant tears became laughter as I visualized us both in those ridiculous outfits and I shared it with her son.

He laughed... and said that in the end... his Mom would have been hysterical laughing at us both.

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

2009-06-10T20:36:00.004-04:00

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?

2009-05-28T22:57:00.003-04:00

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...

2009-05-25T21:02:00.004-04:00

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...

2009-05-22T14:21:00.002-04:00

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

2009-05-22T13:22:00.004-04:00

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:

"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.
"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.
"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.
"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.
"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

2009-05-17T15:09:00.004-04:00

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.

2009-05-14T21:48:00.004-04:00

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.

What is Palliative Care?

2009-05-13T21:04:00.006-04:00

What is Palliative Care?

Definition

Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on relief of the pain, stress and other debilitating symptoms of serious illness.

Palliative care is not dependent on prognosis and can be delivered at the same time as treatment that is meant to cure you. The goal is to relieve suffering and provide the best possible quality of life for patients and families.

Ensures quality of life

Palliative care is not a one-size-fits-all approach. Patients have a range of diseases and respond differently to treatment options. A key benefit of palliative care is that it customizes treatment to meet the individual needs of each patient.

Palliative care relieves symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps patients gain the strength to carry on with daily life. It improves their ability to tolerate medical treatments. And it helps them better understand their choices for care. Overall, palliative care offers patients the best possible quality of life during their illness.

Palliative care benefits both patients and their families. Along with symptom management, communication and support for the family are the main goals. The team helps patients and families make medical decisions and choose treatments that are in line with their goals.

Different from hospice

Palliative care is NOT the same as hospice care. Palliative care may be provided at any time during a person`s illness, even from the time of diagnosis. And, it may be given at the same time as curative treatment.

Hospice care always provides palliative care. However, it is focused on terminally ill patients-people who no longer seek treatments to cure them and who are expected to live for about six months or less.

Provided by a team

Usually a team of experts, including palliative care doctors, nurses and social workers, provides this type of care. Chaplains, massage therapists, pharmacists, nutritionists and others might also be part of the team. Typically, you get non-hospice palliative care in the hospital through a palliative care program. Working in partnership with your primary doctor, the palliative care team provides:

Expert treatment of pain and other symptoms
Close, clear communication
Help navigating the healthcare system
Guidance with difficult and complex treatment choices
Detailed practical information and assistance
Emotional and spiritual support for you and your family

From Getpalliativecare.org