End of Life Care and Cultural Competency

I just finished speaking to a group of medical and nursing students on end of life care and cultural competency.

It’s a big topic.

In health care the two areas where cultural beliefs are profoundly obvious are during birth and during death. In other areas the belief systems are more subtle, the differences not always obvious.

But birth and death? These moments of coming into and going out of the world are rich with tradition, ritual, meaning, and emotion.

The first thing I ask people to do is to think back to their first memory of death in their family or community. Who was it? What were the circumstances of the death? What is their most vivid memory? What rituals and behaviors were observed by the family and/or community?

The answers are fascinating, particularly if it’s a diverse group. There are people who remember all the church bells in the town ringing — they knew someone had died because the bells were ringing at a time when they were usually silent. Others remember wailing waking them during the night. Still others will talk about death being a celebration, a party of sorts.

The important piece is that they talk. Most have never thought about this, let alone processed it in a group. And talking about their experience puts us in the best possible place to continue the discussion.

Because telling their stories helps them realize how significant those moments are, and how critical it is for them to hear the stories of their patients, to be fully present with their patients during the end of their lives.

We move forward into the discussion on the western view of the body as a machine, on how culture affects views of illness, expectations of care, and views of the process of death. We look at possible points of cultural collision – patient autonomy, organ donation, body preparation, the differences in both meaning and expression of pain and so much more.

I usually end the time with a short video telling the true story of a gentleman from Afghanistan named Mohammad Kochi. Mr. Kochi immigrated to the United States with his family and settled in California. At the time of the film he was diagnosed with stomach cancer. The film details some of his care and the disconnect and misunderstandings that occurred, resulting in his refusal of chemotherapy through a pump into his body — ultimately his death because of lack of treatment.

It is sobering and hard to watch. We sit somewhat stunned at the end and there is no gap in conversation.

How could this happen?

So preventable!

Such a misunderstanding!

But these types of cultural misunderstandings occur far too often despite the best of intentions.

There are so many things that come up in conversation, and so much to learn from each other. But we end talking about three areas where we can develop skills.

The first is in self-reflection – How do I react to cultural differences? How do I manage my own reactions? How do I negotiate with patients and families in the face of cultural differences?

The second is active listening Listening to and with the body, listening in with self reflection, listening out by learning from others; listening with the mind by hearing facts and stories; listening with the heart by being willing to hear emotions and feelings.

The third is bearing witnessbeing fully present with the person, letting them know they’re not alone, listening to their stories and their symptoms. 

As is usually the case, I leave contemplative, thinking about life in its entirety, life from birth to death. And I also leave with a renewed resolve to continue developing skills in the areas of self-reflection, active listening, and bearing witness.

Skills not only important in end of life but through all of life. 

Code Pink

October is breast cancer awareness month. In my work this is an important month. It includes legislative breakfasts, educational sessions, screening events, and op-eds for newspapers.

Despite the plethora of information on breast cancer there are times when the information gets lost in the shuffle of life. Messages that would best go from our heads to our health get lost. In an effort to change that I’ve posted an infographic on breast cancer. It’s a different way of looking at what may be old information.

My hope is that you will not only look but act — if you’re young make sure the older women in your life see and know the facts; if you’re older make sure you are regularly screened; if you’re a survivor, share your story! We need to hear it.

Make October more than pink ribbons – make it action!

Code Pink

Story of Survival

One of the unexpected gifts of blogging has been the opportunity to connect with people world-wide who have a story to tell. Because I blog on a variety of topics from cancer to culture (and everything in between) I have been privileged to hear a lot of stories. I want to highlight one such story today and with it a link to a blog.

Imagine having a 6-month old baby girl, waking up daily in awe of this gift of life and finding out that you have a rare form of cancer? I think my natural reaction would be to hold my baby, and my breath, praying I would wake up from a bad dream

Heather Von St. James contacted me after I wrote a piece on breast cancer. Through her email I was directed to her site and quickly caught the passion present through cyberspace. Every passion begins with a story and Heather Von St. James is no exception. She is passionate about communicating hope and inspiration to people diagnosed with a rare type of cancer called mesothelioma. Her story is a hard one.

As a 36-year-old with a six month old daughter, Heather was diagnosed with mesothelioma. Mesothelioma is a rare type of cancer that occurs in the lining of internal organs. There are three main places where it occurs: the lining of the lung or pleura, the lining of the heart or pericardium, and the lining of the abdominal cavity or peritoneum. Anyone exposed to asbestos could be at risk for this serious illness, and Heather was unknowingly exposed. Heather was diagnosed in 2005, and as of this year is a 6 year cancer survivor. Her story reminds me that everyday heroes are present everywhere. People who are quietly, but passionately, taking their experiences, with all the hard parts as well as joys that are part of them, and making a difference.

Many people go through difficult times, and once they are over, the natural desire is to put them behind us, to move on with life and not have to think about the pain any longer. Heather has chosen to use what was painful in her life to help others – in her words “turn my pain into purpose”. Heather blogs at the Mesothelioma Alliance Cancer Blog. Take a look there where you can read her story. There is also more information available at the blog. If you know of anyone who is struggling with this diagnosis, I know Heather would be more than willing to connect with them.

I share my story as a means of hope and inspiration for others.  As a survivor, it is my duty to turn my pain into purpose and be someone that others can look to in situations like my own.  I want my story to help others overcome their fears when faced with any diagnosis, and to realize that giving up is simply not an option. – Heather Von St. James in The Healthcare Marketer

Thank you Heather – for being willing to step up and out with hope and help.

Not Fully Baked

English: pink ribbon

“When you lose your mother at 18 years old, you’re not fully baked. That’s what we do with our daughters, we baste them,bake them and roast them.”

 

The above statement came from the Master of Ceremonies, Candy O’Terry, at the All4One Alliance “Dress for a Cause” fashion show I attended last night. It was part of her story, a poignant story about a stoic mom who had advanced stages of breast cancer. Her daughter watched her body fail from metastatic disease and sat with her in a bleak hospital room during her last four days of life. Because of this single event in her life, she is committed to a cause – that of helping increase awareness and funding for breast cancer research and support for women with breast cancer.

Watching moms at the event because of their daughters and daughters because of their moms was moving. The mother/daughter bond is a unique connection. I’m the only girl in a family with four boys and so my mother and I spent a lot of time together. Imagining my life without my mom is like imagining winter without Christmas, or days with no sunshine. She always makes things better. She always serves tea. The two seem to go hand in hand.

I was baked and roasted in a different way because of the surrogate mothers called housemothers at boarding school. Some were not very good cooks. Others were outstanding and my mom was grateful. It’s hard to give up your kitchen to someone else. Hard to let other people try their recipes that are probably not as good as yours.

Last night’s event was just as I imagined in the post I wrote yesterday – there were many hurting people in a beautiful setting. A lot of loss was represented in the room. Loss of friends, moms, daughters and grandmothers. But this was a group of women who were not going to be defeated by the death of someone they loved. They were there for a reason, for a cause.  In honor of their friends, moms, daughters and grandmothers, they came together to raise money so the rest of us don’t have to go through the sadness of losing the cook before we’re fully baked.

Having a worthy cause to fight for gives meaning during the times of loneliness and questioning “Why?”. These women were examples of true friends and warriors. They could have wallowed and wearied in loss. They have chosen to be active and live effectively despite loss.

In many ways the setting was a world removed from much of what is comfortable to me. As much as I love to dress up and go out, I am more emotionally comfortable in a village dispensing malaria medication. But both places teach me valuable lessons about living with a purpose and recognizing even the hard days as gifts.

What about you? Have you lost someone to breast cancer? Is someone you love going through the grueling process of chemo and radiation? Would love to hear your thoughts in the comment section.

A Sea of Pink

Dedicated to Tami, Betsy & Chien-Chi – you are amazing!

It’s October and across the United States a sea of pink is in place. Pink ribbons, t-shirts, turbans, and signs all urge people to be aware of breast cancer. Susan G. Komen For the Cure sponsored walks and community health center high teas, featuring survivors and sweets, are all on board with the need to know about the disease and fight for funds to inform, as well as the continued need for research funding.

Daily I speak with women who have been diagnosed with breast cancer. They contact me because they have lost health insurance and are desperate for a way to pay for treatment. Our program is their last resort. Some come who have stopped treatment. They can no longer pay and so cancel their appointments. Their oncologists plead with them to continue, but without insurance they see no other way. It’s their voices that I hear when I see the pink ribbons. When women contact me, they are rightfully angry. They have usually lost their jobs, with the loss of their jobs they lose their insurance, with the loss of insurance they lose their treatment, with the loss of treatment, they ultimately lose their chance at survival. I’m not being dramatic. This is fact. It’s a domino effect. Their anger is not at me, it’s at a broken system, but I’m the one who is best situated to receive it. It’s a sea of angry pink.

While to those who have never been affected by breast cancer, all the pink may seem like a cute, little campaign, to those affected the pink ribbons are symbolic of their lives. There is a quiet desperation and determination to make sure women in the future have the best possible options for treatment and survival.

I have learned much from working with these women and I receive far more credit than I deserve from them. It is some of the reflections that I have heard that have affected me the most. My friend Chien-chi said this:

I wasn’t afraid of losing my breast. I wasn’t afraid of losing my hair. I was afraid of losing my mind!

Chien-Chi is Chinese and has used her experience to be a passionate advocate for women in her community to learn about breast cancer and take advantage of early screening. She has moved her passion from heart to paper, from paper to funder, and from funder to program. I am privileged to be a small part of her program to educate the Asian American community in the Boston area about breast cancer.

So I rarely use my role as a nurse in this blog but if you are a woman and you read this you can do a couple of things. As you see the pink ribbons, don’t think of them as pink ribbons, but think of them as women, each of whom are  going through a long journey and process. Read up and talk to your doctor about breast cancer and your individual risk factors. And lastly, if you don’t have insurance and need to be screened, be aware of this program: The National Breast and Cervical Cancer Early Detection Program. It is present in all 50 states, Washington DC, and 5 US Territories and 12 tribes. I know there are varying opinions of government-funded programs but I have worked in this program off and on for over 11 years and can say, without hesitation, that the amount of money spent on the program is nothing compared to the number of lives saved – lives of moms, sisters, grandmas and friends. So – that’s my shout out to the sea of pink that may surround you during October.