Dear Primary Care Provider…

Published on October 27, 2015October 27, 2015 by Marilyn10 Comments

Dear Primary Care Provider:
I’ve wanted to write this letter for a long time, but never took the time. But after a morning coffee conversation with my 23-year-old daughter, I knew that I owed it to her and to the rest of the United States to write what I’ve seen, write what I know.

Because we’re frustrated. And it’s not your fault, but you are the face of medicine today. So I have a few things I want to say, and I’d like you to communicate these to your colleagues in specialty practices, to your staff, to your former professors, and to your administrators. Thank you ahead of time for listening.

We don’t understand your language. You speak Doctor, and we speak The People. The dialects are completely different. We are smart and successful– but we don’t know what the heck you are saying. So train yourselves to speak with the people, not AT the people.
We are so intimidated by you. Really. You frighten us. You come from a culture that is so rigid and inflexible – that would be the culture of western biomedicine – and we don’t know this culture. And your staff can be the worst. Pick your receptionists, medical assistants, and nurses carefully. Because they can make people feel so stupid and small.
Our bodies sometimes scare us. Look, you study the body for a living. For most of us, high school biology was a long time ago.
When we express something that feels important to us, we often feel dismissed. It’s a horrible feeling to have our vulnerability met by nonchalance. We need you to see the person behind the words; to hear the story beyond the symptoms.
On that same note, I think you expect us to know more about our bodies than we do. We don’t. That’s why we come to you.
Please ask us to repeat back what you have told us. That gives both of us an opportunity to clarify misunderstandings.
We know you aren’t our friends, but we do talk about you at parties. We rave about you if you are good, and we tell people to steer clear if you aren’t. We are your best advertisments. All we ask is that in return you treat us with dignity and respect, and sometimes we feel like it’s missing.
A little empathy goes a long way. And I think in the long run, you will realize that our visits will be shorter if you can express that empathy. I suggest you read The Empathy Exams and The Spirit Catches You and You Fall Down.
Culture matters. We view illness and health through a cultural lens. If you don’t get that, then you will fail as a true physician.
After we leave you, we fight with our insurance providers. Because the fact is, the Affordable Care Act did not fix a broken system. It merely provided a bandaid. So two weeks after we see you, we usually get a bill. And that’s why we don’t keep follow up appointments. Because insurance is a multi billion dollar industry, and we can both agree that it runs healthcare.

We appreciate you and the work you have put into your education and our appointments. But we need you to know these things so that you don’t lose us.

Sincerely,

A patient, a nurse, and a mom.

PS – please teach your staff how to take blood pressures properly….just sayin’….

On Cultural Competency & Cultural Humility

Published on October 8, 2013July 8, 2014 by Marilyn31 Comments

I spoke to a class of graduate nursing students yesterday in the city of Worcester. The topic was on cultural competency and health care — a topic I’ve spoken on for many years. They were an amazing group of students; smart, engaged, thoughtful, and diverse.

When I began to do this work around 13 years ago I knew it all. I spoke with confidence and flair, I had all the ‘best’ examples and brought people into the conversation in a new way. But this work is like living cross-culturally; the more you learn, the more you realize you don’t know. The more you experience, the less you are sure of any absolutes. So now, I’m much less sure of outcomes, yet much more committed to the process.

If you define cultural competency at its most basic level, it is about learning to communicate and function effectively across cultural barriers, cultural differences. So no matter where you live in the world, it is something that is useful to learn. In our increasingly diverse societies, it is indeed a critical life skill. The difference however when it comes to cultural competency and health care is that the stakes are higher. Cultural competency, knowing how to function in the midst of cultural differences, can change an outcome, can be the difference between life and death, or life and permanent, irreversible damage and I am not being dramatic when I say that.

There is the 71-million dollar word resulting in an 18 year-old becoming a quadriplegic.
There is the story of Lia Lee; a Hmong child who ended up having severe brain damage, largely because the arrogance of western biomedicine and the ignorance of healthcare providers who did not take into account the family’s belief system.
There is the story of a Japanese mom who ‘didn’t sound worried’ over the phone so was not given an appointment for her small child. By the time she did get the appointment, it was too late and the child died.

There is an argument in the field of cultural competency on the word ‘competency’. I would argue that in every field there are certain competencies that need to be met. As a nurse, I was not allowed to do certain things until I had reached a certain level of competency. It didn’t mean I knew everything, it meant that I was at a point where I could function well and not be a danger to patients. The same is true for cultural competency – I believe that people can reach a level of competency and have tools to use when it comes to communicating effectively across cultural boundaries.

But critical to this field of study, to this skill set is the idea of cultural humility. This term was developed in 1998 by two physicians: Dr. Melanie Tervalon and Dr. Jann Murray-Garcia. They proposed that this was what the goal should be when it comes to looking at outcomes. They say this: “Cultural humility incorporates a lifelong commitment to self-evaluation and self-critique, to redressing the power imbalances in the patient-physician dynamic, and to developing mutually beneficial and non paternalistic clinical and advocacy partnership with communities on behalf of individuals and defined populations.”

How does that work out in practice?

It means being a student of the patient, person, or the community — not an expert.

It means not equating limited language ability with limited intellectual ability.

It means admitting what you don’t know, and seeking to learn what you need to.

It means seeking out those who can function as cultural brokers, as cultural informants and asking them questions, learning from them.

It means knowing the importance of culture for all who we encounter.

It means being capable of complexity.

It means learning the fine art of negotiation, and the finer art of putting what we think is best in the background, focusing instead on what the person or community thinks is best .

Most of all, it means knowing who you are, what your cultural beliefs and values are, and how they may come into conflict with those you are wanting to serve. We wear our culture like skin. we’re so used to it we don’t even think that what we do, how we think, how we govern, how our schools are set up, our infrastructure, our medical system, is all based on cultural beliefs and values. Until we recognize both the complexity and the pervasiveness of our cultural beliefs we cannot move forward in communicating effectively across cultural boundaries. Then, and only then can we move forward on this path.

I left the students yesterday with this quote:

Most things that don’t make sense from the outside usually do make sense if understood from the inside…

It’s a life long journey, but so worth pursuing.

Blogger’s Note: One book I would recommend that looks at cultural competency in the context of western medicine is The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures by Anne Fadiman. It is a profound look at culture, healthcare, and what can go wrong.

Critical Cultural Competence (ansjournalblog.com)
Cultural Competency Faculty Course (adrseattle.wordpress.com)
Health Literacy and Cultural Competency (saraemcd.wordpress.com)
Goodbye Lia Lee

The Myth of ‘Death with Dignity’ – A No on Question 2

Published on October 4, 2012October 4, 2012 by Marilyn16 Comments

As a nurse I’ve cared for hundreds of people who are going into surgery, women who are in labor, people who have cancer, people who are dying. It has been both a privilege and a burden. It brings me face to face with my mortality, my frailty, and my need to figure out what this thing called ‘Life’ is all about.

I have sat with people waiting for their last breath, only to realize there would be none. I have been beside women as they gave birth to still-born babies, weeping with them as tears streamed down their cheeks. Tears that fell on the heads of babies who did not feel them or know the pain of their mamas.

I have cleaned up vomit, suctioned mucus, emptied bedpans,

So there is one thing I can tell you with certainty: There is no dignity in being sick. There is no dignity in bed pans. There is no dignity in throwing up. There is no dignity in fainting or seizures; in high fevers or runny noses, in chemotherapy or intravenous antibiotics. There is no dignity in getting the dreaded diagnosis “You have cancer…”. None. There is absolutely no dignity in labor as you’re hanging out all over the place just waiting for that little muffin’s head to crown.

And Psalm 23 is not kidding about the “Valley of the shadow of death” for there is little dignity in dying.

And yet the Massachusetts ballot is presenting me with a question come November 6 – a question where I have the choice to vote ‘yes’ or ‘no’. It is called the Massachusetts Death With Dignity Act, but it is really a vote up or down for Physician Assisted Suicide.

I get it. We hate pain – for ourselves and for others. “Needless pain!” we cry out! Why should we have to suffer? Why should those we love have to suffer? We’re going to die anyway! Why not be able to control the process?

So why do I, who ooze compassion when I see a hurt bird, let alone human, plan to vote no on this bill that would supposedly “alleviate” suffering?

There are several reasons.

1. While diagnosis is a fact, prognosis is an opinion. Most of us know people who have lived far longer than the prescribed prognosis given for a particular disease state. This is because many things go into living. It’s not about a doctor’s evidence, what has happened before, or what typically happens – it’s about the individual, it’s about will, it’s about faith, it’s about God.

2. Amazing strides have been made in pain relief and end of life care. No longer does end of life care need to be a time of intense suffering. Current research and practice gives great hope to patients and families who are dealing with end of life issues. Palliative care focuses on relief of pain, easing of symptoms, and improving quality of life. This area needs to be strengthened, not weakened by diminishing its importance through allowing patients to request medication that will end their lives.

3. There is no requirement in the language of the law that any family members be notified. This is unconscionable to me! That a patient can take the medication alone, with no one else present, and no record of having taken it is unbelievably bad practice. The potential scenarios this presents have law suits written all over them.

4. Death is not, and never will be, dignified. To paint the issue with language like this is disingenuous at best. Just because you are the one who holds the medicine that can end it all doesn’t mean it will be dignified. The very nature of death is that of losing control, taking a last breath, mouth gaping open, losing control of bodily functions, fighting to live only to die. I am all for easing some of the pain and discomfort of death but let me repeat: It is not, and will never, be dignified. It’s death.

The only dignity given in death is given by others to the one dying, it cannot be given to oneself.

5. Organizations that I respect are against it. The Mass Medical Society, Massachusetts Hospice and Palliative Care Federation, the American Medical Directors Association, and the Massachusetts Academy of Family Physicians are all against it. Why? Because it’s poorly written, because there is already a strong end of life care program in the state that aims to alleviate suffering, because patients are not required to see a psychiatrist or psychologist to check mental health status before being prescribed a lethal dose of medication to end their lives, and because they recognize that physicians should be in the business of providing “compassionate, high-quality care during every stage of life.”

6. I believe the act diminishes and violates the Hippocratic Oath at the deepest level. In the classical version of the oath the statement “I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect.” are words sworn by most physicians on graduating from medical school. The entire oath speaks to the need to practice medicine ethically and compassionately.

Lastly, it is because I operate from a God-centered worldview. I see all of life through this lens. And so I believe that all of Life is sacred – whether it be in the abortion clinic, the battlefield, the workplace, the slum, the homeless shelter, the hospital room, or the hospice. Life, all of it, is sacred. And in believing that Life is sacred, I believe that only One can give or take life. Only One has and knows the big picture.

Only One can offer death with dignity and so, clear-eyed and clear-headed, I’ll vote No.

“Take away my capacity for pain and you rob me of the possibilty for joy.” Ross W. Marrs

“The role of family physicians is to provide compassionate, high quality health care to all patients, in each stage of life. End-of-life care is no different. Given the tremendous strides made in palliative care delivery services, patients with terminal illnesses often live active and fruitful lives for months, if not years….“Given the seriousness posed by the ballot question, and especially given our daily experience as family physicians caring for patients, we urge Massachusetts residents to vote NO to Question 2 on November 6.” Massachusetts Academy of Family Physicians

“We’ll continue to educate voters that Question 2 is poorly written, confusing, and flawed. This is why concerned doctors, nurses, hospice workers, religious leaders and citizens have banned together to defeat Question 2. Visit our website to see the full list of organizations opposed to physician assisted suicide”. Coalition against Physician Assisted Suicide

Death with real dignity (bostonherald.com)

The Many Uses of Olive Oil

Published on August 23, 2012August 23, 2012 by Marilyn10 Comments

There were 6 of us in a small examining room designed for two people — the doctor and the patient. In this case there were two women from the Sudan, two nurses, one patient navigator, one interpreter, and one baby.

It was crowded.

To say I was invited to come to this community health center was something of a delusion, it was more as if I had been challenged to come – challenged with strong words: “This program isn’t working! You try to use this life-style education tool with culturally diverse patients”

To give context the “challenger” was referring to a health assessment that my office had developed to gauge whether a person is ready to make changes to their lifestyle. It included questions on weight, healthy fats, exercise, fresh fruits, vegetable consumption and more.

I was not a fan of the questionnaire – I had worked with people from different cultural backgrounds my entire professional career and knew that this tool had been developed from a bias of western biomedicine. As such, it had limited use.

But I accepted the invitation knowing that at least they would see I was on their side.

So there we were: health professionals, patients, and a culturally biased assessment. Speaking through an interpreter I began talking. I introduced myself and asked if I could ask them a few questions. They nodded in assent – no problem.

And so I began:

“Are you a healthy weight?” Blank looks.

The interpreter tried again, and then looked at me. “This is not relevant,” she said. “They do not weigh themselves.” Of course, they didn’t. What was I thinking? They were women who had escaped the Sudan, made their way through the arduous process of refugee camps and resettlement and I was asking them about healthy weight. Wow. But determined to continue I pressed on.

“Do you eat healthy fats?” More blank looks. My problem-solving mode switched on and I thought – ok, I’ll ask if they use olive oil – that’s a healthy fat.

“Do you use olive oil?”

Their eyes lit up. They smiled. “Oh yes! We use olive oil all the time”. Good, I thought! We’re making some progress…..

“Yes olive oil. We love olive oil! It is wonderful. We use it every day…..on our hair”

I began to laugh, and they with me. The whole encounter was so absurd. I would have gotten more information on their health and eating habits by having a normal conversation and inserting the right questions at the right time instead of following this biased and culturally illiterate tool.

The story is a great example of some of the challenges presented in working with patients from different countries and cultures. The healthcare professional (whether nurse, doctor, social worker or any other) comes into the clinical encounter with his or her own predetermined biases, values, and beliefs. Added to that is the often inflexible culture of western biomedicine under the umbrella of the institution. All of this mixes into a potentially difficult interaction with the patient. We then wonder why patients won’t come back…or get offended…or don’t do as we want them to.

Culturally responsive care is critical to healthy outcomes.

But changing this dynamic is not easy. It’s a journey and as such takes time, preparation, and mile markers.

One of the first mile markers in learning to communicate across cultural boundaries is to understand one’s own cultural beliefs and values. Only then can we better interact with those from different backgrounds. If we don’t know what we believe and value, what is unique to our cultural backgrounds, we are ill-equipped to forge into relationships with those vastly different from us, even less ready to offer them good health care.

And after that it’s about listening to the stories and constantly being willing to learn and adapt.

It’s interactions like the one I’ve described that help me on this journey of communicating across cultural boundaries. They remind me that I have to be ever flexible and willing to see from the other person’s perspective; recognizing both literally and metaphorically the many uses of olive oil.

Got Olive Oil, Honey, and Sugar? Then You Have a Great Scrub (bellasugar.com)

On What Planet is This Women’s Health?

Published on July 17, 2012July 17, 2012 by Marilyn15 Comments

The magazine caught my eye – it had bright colors and screaming headlines, plus beautiful Kate Beckinsale was on the cover. And then I realized it was about Women’s Health.

I work in Women’s Health. Daily I present, write, research and talk to women about health; specifically breast, cervical, colorectal and cardiovascular health.

I know health. I know illness. And the magazine cover below is not health. It’s a poor imitation and false representation of health.

Defying the Pain Scale

Published on April 29, 2012April 29, 2012 by Marilyn13 Comments

“The darker the night, the brighter the stars,
The deeper the grief, the closer is God!”
― Fyodor Dostoyevsky, Crime and Punishment

Pain. All of us have experienced it to varying degrees. In recent years pain has been identified as the fifth vital sign – the first four being blood pressure, pulse, respiratory rate and temperature. And thankfully we have come to recognize how critically important it is to know how to assess pain.

In western medicine we have something called a “Pain Scale”. This scale was developed as a tool to help assess pain in patients – whether it be after surgical procedures, during emergencies, and in illness in general. Beyond the verbal assessment where a nurse or medical doctor asks the patient questions like “Are you in pain? Can you tell me where it hurts? Is it a sharp or a dull pain?” the scale adds a numeric instrument to assess severity: “On a scale from 1 to 10, can you tell me how severe the pain is?” 10 would be the absolute worst pain that you have ever experienced and 1 would be minimal to no discomfort. The rationale behind this scale is to have a reference point understood by both clinical staff and patient.

To a point this scale is a good, all be it culturally biased, measure. Because we all have different levels of pain tolerance, it is helpful when the clinician is trying to make sure that the patient is comfortable and has proper pain relief.

But there is some pain that defies the pain scale. Some pain that is so far beyond a scale that using numbers seems ludicrous. Pain that goes beyond the physical and involves the emotions, the soul.

I have a friend whose pain defies the pain scale, whose heart is broken into a million pieces. She is betrayed and wounded and her soul knows pain. Those million pieces are each like jagged shards of glass that keep on wounding over and over. Beyond the pain is the grief…grief for what was, what will never be again; trust and comfort lost and replaced by a false and poor substitute. All the king’s horses and all the king’s men can’t mend her heart. Her pain defies the pain scale and her grief defies the grief scale. Her symptoms include frequent swallowing and an empty feeling, she sits down to a meal and though she is hungry, she can’t eat. She sits vacantly at her desk, unable to function. She has soul tears that are so deep she can’t cry. It makes the scale a laughable, fallible tool with a limited use.

What do we do when our pain defies the scale, defies our human understanding. C.S. Lewis in his beautiful book, “A Grief Observed” tries to get a better grasp of these emotions. Although it is about grief, it resonates on pain as well.

“No one ever told me that grief felt so like fear.” he says at one point. “I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing. At other times it feels like being mildly drunk or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says.” and then “You can’t see anything properly while your eyes are blurred with tears.”

Defying the pain scale is nothing new. The Psalmist David had pain and grief that defied any scale. Job had pain and grief that defied any scale. And surely Mary, as she watched her precious son on the road to Golgotha, surely this was pain and grief like no other.

So I take hope – for when our pain defies the scale, this is when God Himself steps in with his comfort and love. A comfort and love that are stronger than any man-made and laboratory-developed pain relief; a love of the sort that defies any cliché; a love so strong and a comfort so deep that this alone can speak to the pain that defies a scale.

“But suppose that what you are up against is a surgeon whose intentions are wholly good. The kinder and more conscientious he is, the more inexorably he will go on cutting. If he yielded to your entreaties, if he stopped before the operation was complete, all the pain up to that point would have been useless.” CS Lewis A Grief Observed

“Room 143 Needs a Bedpan”

Published on July 8, 2011August 16, 2012 by Marilyn10 Comments

Hospital room — “Room 143 Needs a Bedpan!”

A tirade by a nurse and a human being.

Walking down a corridor in a recent visit to the hospital, I was lulled out of my thoughts by the abrasive sound of a hospital employee yelling out “Hey! Room 143 needs a bed pan. Can you take care of it?”

Dressed in institutional blue with her name and the status of ‘Registered Nurse’ printed on a plastic pin, she had a tired body and bitter eyes.

Further on, another employee, hair dyed a bright blonde and nails turquoise was speaking in a voice that all could hear “Hi Hon! Here’s your medicine. Then we need to move you into the chair, ok?” Evidently the blonde had not been taught that speaking louder will not cause a non-English speaker to suddenly understand. There are times when I am seriously disturbed by the attitudes and platitudes of those who work in my chosen profession of nursing, and healthcare in general.

When did we decide it was ok to strip men, women, and children of the dignity of identity and make them room numbers? When did it happen that the renowned professor of neuroscience became room 143 and the Mexican immigrant in room 144 became “Hon”, a term reserved for those with whom we have a relationship?

When we strip people of their identity it is easier to treat them as widgets on an assembly line that involve chores but no human interaction. We have turned what we affectionately call our “healthcare system” into many people’s worst nightmare, only they don’t get to wake up and say “It was only a bad dream!”.

Worse, there are those who feel that a complaint will surely affect those we love who are in room 143, and bring about a pay-back of sorts that includes inadequate care and bad behavior.

I’m not asking that hospitals and clinics be resorts or day spas. I’m asking that they address the fundamentals of human dignity and realize that referring to people as room numbers fails to deliver.

I wish I had an answer to my rant. I do believe that once we figure out how to put human dignity back into the healthcare equation we will have a better foundation by which to address the healthcare crisis.

Perhaps putting human dignity in the formula starts with making healthcare less about healthcare executives (who I guarantee will one day be “Room 143”) and making it more about the patients.

Well: Tuning In to Patients’ Cries for Help (well.blogs.nytimes.com)
Socks and bedpans: Coppers growth markets of tomorrow (theglobeandmail.com)

Series on Pakistan: Triage??

Published on January 5, 2011May 4, 2012 by Marilyn8 Comments

Note to readers: This entry is Part 3 of a 5 part series. If you have just begun to read please feel free to reference Part 1: Orientation. Thank you for your interest!

This entry is authored by Carol Brown. Carol is a Registered Nurse and worked in Pakistan for 2 years at the hospital mentioned. She met her husband Dan while working there. Carol currently works as a community health nurse and whenever she is given the opportunity boards a plane to encourage, work, and build relationships.

tri·age –

the rationing of patient treatment efficiently when resources are insufficient
to treat all immediately; the process of sorting victims, as of a battle or disaster, to determine medical priority in order to increase the number of survivors

Following our morning clinic in a remote village where we had dispensed medicine in a rough lean-to, bumping our heads more often than I care to recount, we were headed to a nearby village for an unexpected, unplanned short clinic. We were tired, hot and thirsty. The set-up would be fast. We would see as many as we could in forty minutes. The decision had not been well met by some of us, anxious to call it a day, with the heat, dust and challenges having taken their toll. Our team leaders had determined that for the sake of relationship, of high value here, we would need to do the clinic now and come back for a longer visit and survey of these families’ needs. The short distance on the dusty, rough road was not long enough for the van’s AC to make a dent in the 105 degree heat. We clambered out of the van – five of us, three foreigners and two Pakistanis – with our depleted nine-box portable dispensary.

“Carol, can you do triage?” asked Dr. Wendel.

My internal response: “Yes, I can do triage. I can prioritize well.” Looking into the sea of Sindhi faces in the crowded courtyard, babies crying in their mothers arms, all of them sick and anxious for a hearing with the Doctor, I quickly realized my limitations.

“No,” I answered, “Rahanna needs to do triage.”

I felt a sense of personal failure. I’m an experienced nurse and I travelled ten thousand miles to help. But our time is short, our resources are limited, we’ve given out most of the malaria drugs we have. All of these people are sick. I don’t want to miss the details of their stories, and mistakenly treat the baby with worms and a fever over the one with meningitis because I misunderstand a word or phrase.

Rehanna is a gifted, young Pakistani health worker. She has served at Shikarpur Christian Hospital in numerous roles. She has the discernment and skill to take in all the details and to prioritize appropriately. Her patience and compassion are felt by the women. I watched as she effortlessly took over and organized the crowd.

To realize our limitations is humbling. This scenario played out repeatedly over the course of our two weeks. We needed each other. The experience of teamwork was a gift. We could not function without the help of our Pakistani co-workers. Neither could they accomplish the work without us. It was exhilarating to participate.

Here’s the problem.

Those nine boxes were inventoried and packed on our last day, ready for use by the next team. There hasn’t been a next team. The boxes remain in storage, the medications expiring and gathering dust. The staff on the ground continue to work, but they don’t have the human resources to keep a hospital functioning and run mobile health clinics with the staff they have.

In early December I received an email. Was there any way we could send more money to buy blankets for refugees facing the frigid, forty degree desert nights? Funding had run dry. From our small community in Western Massachusetts, we sent another 1000 dollars. It will buy blankets, but then what?

Update- Pakistan has experienced yet another tragedy in the death of Salman Taseer – governor of the Punjab. Taseer was a strong and outspoken leader, recently working to change the blasphemy laws in Pakistan. See story here:

http://www.nytimes.com/2011/01/05/world/asia/05pakistan.html?_r=1&nl=todaysheadlines&emc=tha2

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