She Made It!

Just pronounced one of my favourite patients to date. She managed to stay until she had her Christmas Eve party in her home.

Happy and sad tears.

And something so beautiful about saying goodbye to my own patients in the way they want.

A True Love Story

First things first. Go get some tissue. Sincerely.

Next, watch this video. It's beautiful. Seriously. Watch it.

Did you love it? Of course you did. Daily love letters? Planning for a partner's life after you die?

Now you may continue.

This is a love story that I first learned about more than 10 years ago. They were one of my favourite couples who came to my restaurant when I was serving. They came from India during a time when you did not date outside your caste. Especially not the untouchables, but love goes beyond these invisible borders when you are good people.

They went to school and were educated in medical fields. One became a brilliant researcher and teacher, the other a fantastic clinician working to save lives. I have had the honour of hearing stories from the students and patients of these couples. They are well loved by those they serve.

The love they feel for each other was obvious in their dealings with each other - the tenderness they showed one another over their table through touch and words, the way they shared their meals, Mrs. would always bring home a treat for Mr. when he wasn't able to make it to dinner. They would tell me stories of their courting and their move from India to Canada. I would often end in happy tears with the two of them. (by the way, can you see why Family Medicine had to be where I'd end up?)

Fast forward over my medical training.

I am doing a hospital elective in the town I used to live in, where I first met the brilliant couple.

We are paged to see a patient who is not doing well. There is a long history of cancer and chemo complications. I'm shocked to recognise my Mr. Love Story on the hospital bed. He looks unwell. Very unwell. I can tell immediately that he's actively dying.

We catch up, I learn the course of his metastatic prostate cancer over the past year. About all the treatments he has been through for the past year. About how Mrs. LS has never left his side, sleeping many nights by his hospital beds. The entire time, they are holding hands, looking at each other with the doe eyes I didn't even know I had missed. Mrs. LS tells me that the love she feels for Mr. LS is only growing stronger through all of this. Mr. LS's biggest concern is that he is leaving Mrs. LS with unfinished business. And how will she continue without him around? Their children will be some comfort but, as with all families, they are busy.

Next comes the part I hate the most. The goals of care talk.

They think they are in the ED for a quick fix so they can go home together. I tell them I think that Mr. LS is dying. They aren't surprised but they are sad. Mr. and Mrs. LS want to have a few more months together. I'm hoping for a week. Mostly I'm annoyed that the colleagues of the LS's didn't let them know (or at least ensure they understood) during their treatments that Mr. LS was dying. I know it's hard to have perspective when the patient is someone you know. I learned that it is even harder when it's someone you love.

My colleague came to see the LSs and did the evaluation. My visit was to determine goals of care and ease the conversation for the next doc to evaluate and admit Mr. LS. The next doc came and told me that my week was overly optimistic and that Mr. LS would not have more than a day.

The funeral service was beautiful. Both communities came out to celebrate the life of Mr. LS and the love between him and Mrs. LS.

As with most of these painful encounters. I want to learn.

Lessons learned here:
1. Love stories are important. They are everywhere and give us something to hold onto when everything else is crappy. Ask patients and find out what their love story looks like.
2. Having perspective with patients who you are emotionally attached to is impossible. Ask for help. Know where the boundaries are.
3. Find out patient expectations early in the interaction to best help your patient.
4. Serving others provides your emotional self with great nourishment and can allow a love to grow exponentially through adversity. I served food as a waitress but now I serve my patients. I am constantly overwhelmed by the lives my patients live and their willingness to share these lives with me.

Youngman's Death

Where has this poem been all my life??
Now that I know Roger McGough exists my life means so much more.
Let Me Die A Youngman's Death

Let me die a youngman's death
not a clean and inbetween
the sheets holywater death
not a famous-last-words
peaceful out of breath death
When I'm 73
and in constant good tumour
may I be mown down at dawn
by a bright red sports car
on my way home
from an allnight party
Or when I'm 91
with silver hair
and sitting in a barber's chair
may rival gangsters
with hamfisted tommyguns burst in
and give me a short back and insides
Or when I'm 104
and banned from the Cavern
may my mistress
catching me in bed with her daughter
and fearing for her son
cut me up into little pieces
and throw away every piece but one
Let me die a youngman's death
not a free from sin tiptoe in
candle wax and waning death
not a curtains drawn by angels borne
'what a nice way to go' death 

Roger McGough

Suicidal Ideation

We are taught to screen for patients who want to kill themselves. Mnemonics such as SAD PERSONS offer us structure for listing risk factors that put us on high alert.


Often I hear things like "what's the point in taking my medication when it's only prolonging the inevitable?", or "I'd rather have hair than live the extra year that chemo will buy me." We call this passive suicidal ideation. People who do not plan to kill themselves but wouldn't mind if they were dead.


Shocking to me today, was the patient who calmly told me his plan for suicide. He has spent months researching a clean, pleasant way to die which he believes will not scar his family. He has even invited his brother to sit with him as he goes. This is a man who may not have long to live and wants to leave the world on his own terms, in the manliest way possible. Being eaten alive by wild animals would be preferable to the slow death his COPD promises.


More shocking to me, was the way I dealt with this news. I didn't miss a beat and continued to ask him to explore the idea.


Now that his plan is in the open, psychiatry needs to be involved to prevent him from preemptively taking his own life. I find myself questioning the futility of that, but will honor my oath and do all I can to keep my patient comfortable and alive as long as I can.


The psychiatrist may lift the Form One because the patient is reasonable.


In the mean time, I'm researching how to get an angry grizzly bear into the Resp unit with no one noticing.
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Grief

People try so hard to be helpful with those dealing with the loss of a loved one. They hate to someone they care about in pain.

My advice to anyone in this situation - "should" is a bad word. You mean well, I know, but telling someone they should take dance lessons or should get out more or should lay down and cry is only adding to any guilty feelings they already have.

Instead, if you know of someone who found dance lessons helpful, "I know my friend Sally found dance lessons got her out of the house and gave her a chance to talk with people who didn't know Stanley. I don't know if that's the sort of thing you like, but I know it made Sally happy." Now your friend Sue doesn't feel she's letting you down if she doesn't want to tango.


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Doctors choose less care compared to their patients

I've talked before about how I feel about end of life care. I want my patients to be comfortable. I want to avoid any interventions that are not going to improve quality of life. Patients and their families don't always agree with what I want. That's their prerogative. End of life is a scary time for people and involves decisions we hope to never have to make.

Patients who are doctors tend to choose end of life care with the least interventions.

"In a 2003 article, Joseph J. Gallo and others looked at what physicians want when it comes to end-of-life decisions. In a survey of 765 doctors, they found that 64% had created an advanced directive—specifying what steps should and should not be taken to save their lives should they become incapacitated. That compares to only about 20% for the general public."

It may be worth including these stats when discussing end of life care with our patients and their families. We are always told to use evidence based medicine, and to not ever answer "what would you do if you were me" with a straight answer. This seems like an ethically sound way to answer this question.

End of life

The Globe and Mail is doing a fantastic series on end of life care in Canada http://www.theglobeandmail.com/life/health/end-of-life/. If you haven't looked at it yet, I really suggest you do.

Reading it has made me realize how very pessimistic I often am when strangers are in front of me in distress. The section on critical care reminded me that young people who are mentally capable end up on ventilation too. So much of my experience has been with both the elderly and those who have become mentally incompetent due to stroke that I'm forget that anyone else could find themselves in need of a tube down their throat.

That article in particular showed a hopeful future for a few of the patients and families interviewed. I'm sure that after talking with the family and patient I would see the value of ventilation but I hope I would be starting from a place of being able to listen and being open to the family's needs.

Seeing how futile vents often are for patients has already jaded me. I forget that people may have more that they need to tell their family and pets, how important getting to say good bye can be for a family, that people do sometimes get better and that having hope is one of our most precious commodities. At least I'd seemed to have forgotten all that while reading these articles.

My hope is that with the patient in front of me I will continue to have an open mind, to consider what the patient wants and to have hope for a brighter future.


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Family Food Lore

When I was hospitalized as a teenager, my dad would come to visit me at dinner time. The hospital food they gave me was awful, seriously terrible. Rubberized pork chops, cold mashed potatoes and cooked carrots. There is no food I hate more than cooked carrots. My dad would sit with me and eat my food for me so the nurses wouldn't give me trouble for not eating. He didn't really know how else to show he cared that I was in hospital in the first place.

We would do the same when we visited other sick friends in the hospital. Bring chocolate or cookies and fruit then share them. Our family would bring Christmas dinner to the long term care facility and enjoy food and fun with my grandmother with Alzheimer's.

Families see food as a way to heal and to show we love each other.

We all have stories in our family about food. The chicken soup that grandma makes that can make anyone feel better, the day Uncle Bob started eating again and we all knew he would survive, turkey dinners mean that family is coming over and the house will be filled with love.

It can make things very confusing and difficult when a loved one at the end of life stops eating. We know from our family lore that food means love and health. It can be devastating when families aren't able to provide one of the few comforts that they know how to give.

Families often want to use what many health care providers consider to be extra-ordinary measures to prevent their loved one from starving. This includes tubes from nose to stomach or a tube inserted into the stomach or intestine through the skin which requires surgery. I've spent quite a lot of time explaining to families that at the end of life we don't really care if we are eating. When the family pushes for tubes, I ask them about the food lore in their family. Through that conversation we are able to find other aspects aside from the food that made the interaction loving.

Having my dad with me despite his hatred of hospitals was a huge deal. Singing songs with my cousins was wonderful. The story of the magic soup doesn't need the soup to be told. Memories of Christmas dinners are as much about the conversation and weird dates as the turkey. Holding hands, hugging, kissing and laughing are as much a part of family food lore as the food itself.


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I'm so lucky

It was recommended by one of our palliative care teachers that we go to the visitation of our patients that pass if we can, send their family a card if we can't. I learned today that I need to copy out the address of the family of the patient I am palliating if I want to send a card - the floor tends to swoop out their chart quite quickly.

Tonight though, I went to the visitation of one of two of my patients who passed this week. It never ceases to amaze me how willing people are to accept me into their most difficult times of life.

This family was a treat to work with - all on the same page, very open about their concerns and their feelings, funny, realistic. They clearly love their mom. There were no arguments about DNR status or any parts of care. They were touchy, huggy, and generally lovely to be around. We were all grateful that their mom went so quickly. No one ever wants someone as funny and sweet as this woman to spend a long time dying.

She made me giggle when I first met her on admission to the hospital. She asked me 5 times in less than half an hour where her cell phone was. It was safely tucked under the stretcher. She had survived a few re-occurrences of her colon cancer, but this one was causing mediastinal widening that was making it very difficult for her to breath. It didn't take long before we realized this would be her last battle.

It seemed like a natural thing for me to go to the funeral home tonight. It's something you do for people you care about. I recognise that I've known this family for less than a month, but we've spent important moments together and I like them. They were very grateful to see me and said that it was a big deal for me to come.

That threw me off.

I always feel like I'm intruding on someone else's space at things like this. All I wanted to do was pass on my condolences and thank them for letting me be a part of their mother's care. They needed to talk though.

I forgot how little the closest family to the deceased gets to talk during visitations. Everyone else wants to share stories and reminisce and generally, I think, make themselves feel like they belong there. I had very little to say except that their Mom made me giggle. It gave the family room to talk about how the death had affected them. Up to this point, our relationship had mostly been me finding out more about Mom, more about the family's relationships with each other and passing on the care plan to the family. We were talking mostly about things in the past and items on our collective to-do list of death. Aside from reminding them to take care of themselves by sleeping, eating fruits and veggies and remembering to drink water, we didn't talk much about the affect of death on the family.

The brother was focused on his Mom's last 10 minutes. In his line of work, he had been witness to many deaths. He was expecting the worse. Up until Mom's last day, he and his sister had not been alone together in the hospital room. It was clear by Mom's laboured breathing that her death was going to be close. The pair decided to stay with Mom, talking about their childhood and letting Mom know they were there. Quietly, peacefully, Mom just stopped breathing. It was the most peaceful death the brother had ever witnessed and it was obviously very important to him. We both teared up.

Sister was blown away by the caring provided by the nurses in the hospital. She felt welcomed and safe there and knew that Mom was being well cared for during her last days. Even when Mom kept forgetting where her cell phone was, one of the nurses would point it out for her. It was important to sister that I pass that onto the nurses. One nurse in particular found some legal documents that had been left in the room by the family. Worried that it might cause the family more grief when they realised it was missing, she drove to the funeral home after her night shift to make sure the family would have the documents in a safe place. This act of compassion, empathy and kindness was overwhelming to sister and to me, and we both cried a little.

Brother in law wanted to thank me in particular. That seemed strange to me. I was just the resident making sure we ordered the best meds and protocols so that Mom would be comfy. Apparently, I also hugged sister when she needed it, touched Mom when I talked to her and generally shut up and listened to what the family needed. He explained his theory about people not communicating as much know as they used to and that he hopes I can mentor other docs to share a bit of myself with patients and their families by putting myself in their shoes. He was also very grateful that we never tried to push our own agenda. At every step we checked in with Mom and her family to find out what would be the best plan for all.

This time, just I cried. It was the nicest compliment I've ever received. And then I had that nagging feeling again, that I was an Impostor among these wonderful people, sapping energy that they should be funnelling into their own grief and healing. That's when father in law thanked me for letting the kids talk, and I felt useful again.

Suddenly I remembered the cell phone. I asked sister where Mom's cell phone was.

She giggled and said it was in her hands in the coffin. Mom will always know where her cell phone is now.

When there’s nothing left to do

A young patient showed up in our paediatric ICU from a periphery hospital. We were told that she had diarrhea and fever that was refractory to treatment, but the x-ray images which were supposed to accompany the patient were lost. Usually this was a hindrance to care but in this case, it meant that we were able to discover what was happening much sooner.

Looking at the abdo x-rays with fresh eyes, we realised that our patient likely had lymphoma which was causing the lymphatics in her abdomen to become so enlarged it was impeding her ability to pass stool, causing overflow diarrhea. Her decreased appetite noted in her transfer file was caused by an obstruction, not as a side effect of the suspected infection. A biopsy confirmed our suspicions and also let us know that this was not going to be curable. It was horrible.

Our patient was an adorable young girl, curly hair, puffy face, fever for months and clearly unwell. She played in her hospital crib while she could, but mostly she slept.

These conversations are never easy to have with patient’s families. They are especially hard to have when the family knew that their child was feeling unwell and the news they were about to receive was horrible.

My consultant took the patient’s family into the quiet room every ICU has. The parents did not want to leave their daughter alone but I was happy to miss this particular conversation. I stayed with the little girl, playing in her crib, then holding her in my lap and rocking her while we watched Dora. She eventually fell asleep there, I am known for being soothing and tend to make children fall asleep quickly. I’m proud of this super power.

When the family came back. obviously distraught, they stood around their daughter and I. These poor folks were so much in shock from the news that they had just received that they didn’t know what to do next. I ended up gently standing up and asking her father to sit down and take her, which he did, sobbing.

My consultant thanked me for caring for the patient, said that it seemed to comfort the parents while they were in their meeting. She really wanted me to go into paediatrics because I’m able to insert myself quietly where I’m needed and so few med students/docs seem to do this well. To me, it just makes sense to snuggle a sick child when she needs it, to hug a family who has just lost their husband, to cry with the woman diagnosed with breast cancer metastasis and to joke with the families under so much stress they don’t know what else to do. I try to do it in a way that isn’t “too familiar” but makes the patients and family feel cared for. I step out again as soon as I can.

When I got home the night after my snuggle, and expected to be more upset than I was. I felt good with the choices I made that day and how we had been able to do what we could.

With the sick kiddos I met in the ICU, I decided to squish as much love and care into their teeny bodies as I could in the time I had with them. If I’m able to maintain this outlook, I really think that I may be comfortable with paediatric palliative care.

Tenth Anniversary

It has now been ten years since one of my uncles passed away. He will never know what kind of difference he has made in my life.

Seeing how he and his family were treated in the hospital when he was diagnosed with a terminal brain tumour was pivotal in my decision to pursue my medical training. I had already decided that I really wanted to be a physician, but seeing how much my family needed to know what was happening in their decision making process, an advocate who spoke the language of the hospital. The docs who were speaking with the family were patient, kind and thorough. I'm not sure there could have been better people to walk my cousins and aunt through the difficult decisions they needed to make. We were lucky/blessed that these were the docs we had for this process.

My family stood vigil over my uncle and his family. We took over the entire waiting room and, not to put too fine a point on it, harassed the staff with our questions. There were arguments among the family about withdrawal of care, whether or not this is what my uncle would have wanted. It was both an awful time for us and a fabulous time. We were close and pulled apart at the same time.

The night before care was withdrawn, the family threw a SuperBowl party for my uncle. Pizza, beer, football being thrown around.

On the day of his funeral later that week, I was very upset. Not just for the loss of my uncle, but because I wasn't ready for losing this generation of my family. I think I've mentioned before that I have a large family. My younger brothers, all much larger than me, surrounded me in a circle and took turns rubbing my back and comforting me. They made me feel safe.

My aunt did not take her husband's death well, as anyone would expect. Unfortunately though, she didn't have the resources I seemed to have nor a physician who saw the warning signs of someone who was not coping well with loss. Her daughters did all they could to help.

I always like to think that I learn from tragedy. So what I have learned from my uncle's illness and death is the following:

1. Families are complicated - never assume that the person standing in front of you speaks for the entire family.

2. Families deal with death in different ways. Mine is very used to family members dying - a side effect of having so many members. We know that touching one another and the dying person helps us get through. We know that bringing "busy work" keeps us grounded when our world is spinning out of control. We know that there is often a magical time just before death when the patient becomes lucent, and needs to speak with their children/partner so whoever is with the patient needs to go and get them for this window is fleeting.

3. Families will have a lot of questions. They need to know the steps in what is happening next and how to prepare for the death itself. They will also ask these questions again and again. It's tempting to say "I already told ... this", but imagine this is your family. You need to be patient and explain it again or even better, have a large family meeting to explain it to the entire family at once, answering questions and decreasing the misunderstanding that can lead to family conflict.

4. Sometimes those closest to the ill member need to be told, lovingly, to get their butts home to bed.

5. Since these members of the family are spending so much time in hospital, offering to clean their homes, make some casseroles for the freezer, do their laundry can be the best way to help a family going through a death.

6. Laughing is OK. So is crying. Showing that you care about the ill patient and their family is most important. While you never want to presume that you are feeling more than the family, letting the family know that their grief and emotions are justified can be helpful. It should never be easy to withdraw care from a patient. Never, no matter how ill the patient is.

7. Never presume to know what a family wants or needs. Ask. A SuperBowl party meant quite a lot to my uncle's family, brothers and sisters. It made them feel a bit of control over this completely uncontrollable thing that was happening.

8. I've learned that I'm not alone. I have brothers who love me as much as I love them.

9. The family of a patient who has had to have care withdrawn is particularly at risk and needs to be cared for by their family and their physicians. Judgement of the choices they make to deal with the pain they are feeling is not appropriate and will not help. There will be times that tough love may be needed, but gain the respect of the family and try to understand their choices before pushing your own agenda.

Though all of this learning came from his illness and death, I think what my uncle would appreciate most today, is that they were good enough to throw a SuperBowl in his honour.

Oops.

I've gotten myself so far behind with 6 projects that I can barely breath. How did I let this happen? Too much T.V. probably. Stupid T.V. Plus I've definitely stretched myself beyond the real capacity I have for working.

Very little real work got done this weekend, but I did get into the habit of going to the gym every day, so I suppose that's something. I ended up counselling a couple people too - how is that possible? I'm on break fer cryin' out loud!

After doing 2 years residency in Family Medicine, we have the option of adding on a third year in whatever we'd like. I spent quite a bit of time looking at my options this week and am quite confused about what to do. Palliative care has been calling to me, so has psychotherapy, obstetrics and paeds.

Thank goodness I've got another 5 years before I need to make that decision.

Palliative care seems a bit out there right? It's not. One of the things that really drew me to medicine was the way my uncle was treated by the docs caring for him during end stage pancreatic cancer. They were patient and compassionate with his family as they explained the options and what quality of life he could expect if they continued treatment. They allowed us to have a mini - family reunion/going away party for him in his hospital room. To me, they gave him a good death. There's something really noble about giving people a good death.

To me a good death is on the terms of the patient. They deserve to spend their last days in the way that their well - self would have liked. Their family also deserves to spend time with their loved one in a way that is hopefully not entirely clouded by pain meds/end of life delerium. The family and patient need to be heard. This is a pivotal moment in their lives and they deserve to be able to talk about it and celebrate/mourn.

I was lucky enough to get to hang out with a palliative care doc a month ago. In the hospitals here, there's a palliative team working with the docs to provide a comfortable end of life experience. Social workers in particular are available to the patients and their family as they work through what will be happening next. Tests and medications that don't have short term effects are discontinued so that the last moments aren't spent being poked and prodded.

Maybe when I hang out with a psychotherapist though, I'll feel just as passionate.