“Let me know if there is anything I can do”

“Let me know if I can do anything.” How many times have we uttered that sentence when a friend, distant relative or a colleague has informed us they have suffered a loss of a loved one? Don’t get me wrong, I’m sure most of us mean it and it seems like the right thing to say along with “I’m so sorry.” When I look back through my life, I can easily count how many times people have taken me up on my offer. As you’ve guessed, and I’m sure you can relate, it’s 0 number of times. In a time of loss and pain, people don’t want to ask others to go out of their way to help. They aren’t going to tell you they have no energy to cook, need help watching children, money to pay the bills or buy groceries. They won’t tell you they just need a hug and your gentle presence. We are afraid of impinging on people’s privacy and space. We don’t know what words to share or how to behave and in that uncertainty of what to do or say is where the subsequent isolation occurs for the one grieving. The isolation then leads to a sense of loneliness despite the rich number of friends and family willing to help but not knowing how.

Now that I’ve been through losing a close family member to cancer and experiencing the pain of grief, our family was grateful for people’s thoughts and prayers, however, we very much appreciated those friends who did simple things such as bring us a meal, watch our children (so we could have some quiet time) and checked in on us to see how we were doing. It was those who walked in our shoes through their own similar experiences who didn’t shy away, knew the right words to say and were insistent on being there for us in a tangible way. So what can you do if you haven’t walked in our shoes but want to be there for your friend, colleague or relative who’s lost a loved one? Here are few suggestions which really helped our family.

1. Ask “How are you doing?” The question is open-ended enough that it allowed me to elaborate on the days I felt like talking or cut the conversation short on the days I didn’t. There were days I didn’t want to talk about my feelings, however, I felt more alienated by those who never asked. The common mistake most people make is to assume they will make the person more depressed by asking, hence, reminding them of their pain.

2. Bring a meal. Sounds simple enough, however, this was much appreciated on several occasions when there was no time or energy to feed my family. Close friends didn’t ask if they could bring us a meal, they just asked what time they should drop it off.

3. If there are small children in the family offer to watch them or pick them up from school. We were so grateful for those families who took our children for play dates or out to meals with their children. It gave us some down time to let us be present with each other and our feelings.

4. Consider gift cards. This is helpful whether there are financial constraints or not. If there are financial constraints, I think it’s harder for people to accept cash, therefore, a gift card to a local grocery store or department store will be appreciated. On the other hand, we were given gift cards to local restaurants, which as stated above, allowed us to spend more time with family than worrying about cooking and cleaning.

5. As a follow-up to #1. We noticed immense support initially, however, it began to dwindle as the months went on which is understandable, however, those that have walked in the same shoes have continued to check in with us and see how we are doing. Nothing too intrusive but that great open ended question of “How are you doing?”

This is a short list but nevertheless a few suggestions that pulled me through some of the darkest times during the grieving process. For those that have gone through losing a loved one, what to do for a friend feels more natural, however, I hope this blog post will help others who genuinely want to help but don’t know how. It would be great to hear more suggestions from those who have experienced support from others so that I can expand this list.

-Hospice Physician

 

 

 

Killing Cancer

I’m an assistant clinical faculty member at a local university which trains nurse practitioner (NP) students. For me, the next greatest thing to providing patients with Palliative Care, is to teach it. I enjoy teaching immensely and when the NP students rotate with me it’s great to see their growth over a 10 week period. As part of their grade to pass, they must do a reflection project. Although “project” may seem involved, I leave it up to the student to decide what they are going to do. I give them some examples of students who did it during my fellowship, which included poems, photography, water painting, playing an instrument, interpretive dance etc. The only criteria is that it reflects or ties in to what they have learned through the rotation. The following essay was written by one of my students and she gave me permission to post it here.

Killing Cancer

I think “end of life” first registered when I was 9 years old.. I found a copy of Kubler Ross’s On death and Dying in my home. Probably present because of my father’s exposure to his own father’s untimely death at 50 years old. and I preceded to weep on the front porch where my parents found me. “No, Darla, no one is dying.”

The youngest of four. I was really a “Daddy’s Little Girl”. And I think as my parent’s lives and marriage got better, I became their love child that got to explore a better time with them. But shortly after my 12th birthday, in January, 1985, a weekend get-away with my parents was cancelled. Something about dad having headaches and having to go to the hospital.   When my father called from the hospital to tell me the news that our trip was cancelled, I am pretty sure I was enraged and no idea what was in store.

My brother came home that night and said “Don’t worry, Darla, he just has headaches.” The next morning was different. My mother sat me on her lap and told me that “Dad was going to die; he has a brain tumor.” If it wasn’t so sad it would be hysterical. There was no hope, no prayers. Just that. He is going to die. Period.

I got every stuffed animal and poster off my wall to bring to his “bright eyes” at the Mass General Hospital. My mother said his eyes were bright because of the high doses of steroids given to relieve pressure on his brain. They did the craniotomy on January 13: his glial blastoma was too entwined in his brain they told me. It was too twisted together. It was like two hands wrapped together. This tumor resembled his namesake, his own father’s brain cancer. Just a different area of the brain and more aggressive.

They told us he had 9 months to live. Did he and my mother discuss ‘goals of care’? I guess. They made the decision for him to Die at home. This apparently not well-supported by my father’s family. His children, us, watching his last hours and days of life.

At month 8, I went to a friend’s house for a sleepover during which time he declined so rapidly that when I returned that weekend, he was in a wheelchair and was nonverbal.

Once confined to bed, I used to lie in his adjustable bed with him, much like my own children lie with me. And I remember how he smiled when the around-the-clock private duty nurse said, “Look Barney your daughter Darla is here. She is helping to turn you…” I remember those bright eyes shining when he would see Redd Foxx on the TV. It was so innocent and beautiful.

Family came and went. Hurricane Gloria blew into town late September, 1985 and I danced and danced and danced in the wind.

I remember his breathing became shallow and slow. And looked like it might stop. And then it would just start again.   My mother says now that he died Christ-like, saintly. She said he died free from sin. He was just skin and bone.

And at 9 months on October 1st, just as the doctors told us, he died. In our dining room, in an adjustable bed. Holding the precious hands of his namesake, my brother. the only one that was his by his side. He took his final breath.

I awoke to my mother crying and she told me he was gone and I jumped on his adjustable bed and hugged his lifeless body.

My mother, a nurse, said she didn’t sleep for a year. Having to sleep in a day bed close to his adjustable bed for fear that he might get up and fall.

Ironically, hospice, wasn’t popular my mother said. My father missed the Hospice Medicare benefit by one year.

And he also missed Duke University killing Brain Cancer with Polio by 31 years.

I know why it is so important I tell you this story. Because nobody talked about him after he died. I mean nobody. It was too painful for my mother and my older siblings were kind of tuned out. My family kind of fractured after he died. And we have been trying to put it back together ever since.

My siblings and I, we became survivors. In a unique club.

Why is it important that I tell you this? Because life has supported my healing and I have found purpose. I guess a 12-year old doesn’t understand the finality of life. Adults might. There are no videos, no tape recordings of him. Few pictures.

And it shaped me, it led me to be here.

But I found that just like someone who has breast cancer gets involved in the fight. I am getting involved in the fight to support people who are dying that happen to be living. Because maybe if we just start talking about dying, we really won’t miss living.

My dad missed a lot. He missed his son-in-law’s. And you know he really got cheated. He told me he really only had children to have grand-children. And he really missed out on that. But now I get to see his “bright eyes” in my children’s eyes. And I do. And I am so happy that happened. And I am really happy that this happened (rotation in Palliative Care). And I got to be here. Because it is very important. And I tell my children that all the time.

-NP Student

 

Trapped In A Nightmare

In this post from the blog Team Jonny, it’s been a week since Jonny died and Jonny’s girlfriend (JGF) writes about her grief. I highly recommend this blog to everyone, especially to those who may be experiencing grief. She’s written several entries after Jonny’s death and she is an open book expressing her raw emotions and feelings. I think most people don’t know how they’re supposed to feel after the passing of a loved one, however, I think learning about the feelings of others in the same situation can help them through the process. By reblogging her entry I hope this will touch and help at least one person who is grieving. Thank you JGF for continuing to share such an intimate piece of your life with us.

Team Jonny

It’s been a week now.
I genuinely don’t know how I’ve done it.
It still feels as raw as it did on the day and, if it’s possible, I miss Jonny more each morning I wake up without him.

I am completely uninterested in a life that doesn’t include Jonny Walker.

Don’t worry, I’m not suicidal! If anything I want to live more than ever before; why would I take my own life when there are people like Jonny who don’t have a choice?

There are people out there who are literally dying to be alive.

No one should ever abuse the gift of existence; it’s a cliché but it’s never been more prevalent to live everyday like it’s you’re last.
Especially for me; I’m going to travel the world. I’m going to work hard. I’m going to follow my dreams and jump into a career that brings me happiness. I’m going…

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The Secret Lives of Doctors

“Doctors worry about you — a lot. Not in a cowering, you-might-be-a-lawsuit-waiting-to-happen way, but more like in a, “Please, Lord, let them heal well despite the fact that they are diabetic and still smoking a pack a day, and though I know it must be hard for them to quit, I’ve asked them to stop so many times” way, or a “That specimen looks worrisome. I hope it will be fine and that they won’t need more surgery. I wonder how long it will take the pathologist to let me know?” way.”

This was an excerpt taken from a great short piece written by Starla Fitch, MD for the Huffington Post (Link). I think it’s very enlightening to the lay community about how doctors think and live their lives with the patient mostly being central to it. Although I did identify with most of the piece, I felt very drawn to the paragraph I quoted above.

As a hospice and palliative care physician I do worry a lot. I worry that I won’t be able to control your loved ones pain or other symptoms. I worry the agitation may be too severe to control. I worry that my intervention may be sedating even though my intent is just to control the pain. I worry that my prognosis of time may be way off, since you have family coming in from all over the country, even though you’ve reassured me that “I’m not God,” and “no one really knows.” I worry that you might panic and call 911 even though your loved ones wish is to die at home. And lastly, I worry that your loved ones death will not be as calm and peaceful as you hope.

Do I worry? Yes I do, but I would choose medicine every single time if I had a chance to do it all over again.

Chaos, cancer, family, and love: The value in just showing up

Great article by blogger Ann Brasco (Twitter @annbrasco). A powerful paragraph in her entry which stood out to me reads, “Maybe its about less doing and more just being present. In a world that pushes us to fix, cure, act and immediately alleviate, the value of just being present is often overlooked.” Early in my Family Medicine career and while contemplating doing a fellowship in Hospice and Pallative Medicine a chaplain took me on a visit and taught me the value of just being “present.” Sometimes two souls sharing the same space, the same air, the same warmth is more meaningful than we’ll ever know.

Chaos, cancer, family, and love: The value in just showing up

Saying Goodbye

By: HPMFellow

Patient “turnover” is pretty high in hospice work. It comes with the territory of serving a patient panel with a limited prognosis. When a patient quickly comes and goes off our service and I’m made aware of their death, my usual response is either irrationally impractical (“but I was going to see them tomorrow!,”) or slightly sentimental (“I wish I had more time to know them better.”)

It’s not the way with every patient and family I’ve met – I’ve had some rewarding longitudinal experiences which have felt “complete” for lack of a better word. I get the opportunity to help and see a person become more physically and emotionally comfortable before their final departure, and I get to meet with them more than once. However, even during these more whole patient experiences I’ve only had the chance to say “good-bye” once.  A real good-bye.

I had heard rumors from my patient’s social worker and RN case manager that morning that he was planning to move back to Peru to live his final days. He and his family recognized he was approaching his final weeks of life. The disposition plan was to supply him with enough medications for last him through his last month of life.

As I wrote out my patient’s prescriptions I started reciting my standardized closing routine of the home visit out loud: “Please don’t hesitate your RN case manager if there’s any changes or questions, use our 24-hour triage line at any time of day -”

And then I stopped at the part where I schedule my next visit or throw in the well-intentioned but trite, “take care.” There would be no next visit. This was the closing send-off.

I hadn’t prepared any words – any closing statement that alluded to the future seemed awkward. I could see in his eyes that he knew what was coming next. I was suddenly overcome with emotion as I looked at my dying patient’s face and realized out loud, “this will be my last visit with you.” It was the last time I’d see him alive. “It was an honor to serve you.”

What came next was also unexpected – happy tears and hugs. But it made sense! Yes, mortality was just acknowledged out loud, but the next leg of the journey would be one of returning to a place this man knew as his home in this life.

The family asked me to join them for a group photo, and I did wind up telling them to “take care” of themselves and each other in the end.

I have the terrible habit of “chart stalking” patients in our EMR system long after my responsibilities to their care have ended. I discovered my patient died within two weeks of our final farewell.

I don’t know if I’ll ever again experience a parting as beautiful as that one – I’m happy that I get to remember my patient as an alert and talkative man with smiling eyes.  But I do take pause with every patient good-bye now. It may not be the last, but I realize it still has the ability to be meaningful if I just recognize the potential.

Rapport Report

By: HPMFellow

Few things feel better than making a genuine connection with another human being.

In the palliative world you have the opportunity to do this quite frequently. I don’t forget that I’m in that place of privilege. But every so often the rapport you establish with a patient or their loved one can backfire when someone is experiencing grief in an unhealthy manner.  It’s times like these that having a handle on good self-care and setting emotional boundaries may provide relief from burn-out.

A recent encounter I experienced with one of my home palliative patient’s daughters has left me in a reflective state about the risks and benefits of establishing good rapport. When I met this patient and her family it was clear to me from the onset that my patient had reached a comfortable place of acceptance with her advanced disease, and that most of my palliative energy during home visits would be expended on helping guide the primary caregiver through this challenging journey with her mother.

I must admit – there were certain identifiable characteristics of this woman who I believe allowed me to particularly amplify empathy to her. She was a woman who obviously cared deeply for her mother, a woman who was self-sacrificing, and a woman who was openly self-deprecating in her neurotic tendencies. This woman reminded me of my own mother. My mom was the primary caregiver for her dying grandmother several years ago and I witnessed first-hand how her deep engrossment in my grandmother’s care affected her relationships with siblings, her family life, and at last her own health.

The day I met this daughter I recognized that she had already felt these pangs – “I just got into a fight with my brother – I know I shouldn’t have done that in front of Mom,” “I’m running late to pick up my kid from the dentist,” “Oh, that must be the plumber at the front door.”  After meeting with her and the patient together, I asked how she was taking care of herself. “Not at all” was her honest reply. I said something to the effect of minding her self-care, and she genuinely expressed gratitude for this recognition. I walked away from the house feeling like I had just had ended a Friday with a “good encounter.”

I guess I forgot to recall that people with anxious propensities can ride a tumultuous course of feelings. It should not have come as a surprise then that I may be the target of her next emotional tide when I called to check in the next week. A seemingly benign, “How are you doing?” was returned with the following exchange:

“Not good. Yunno, doctor – those medications you stopped last week, I should have never stopped them. I shouldn’t have listened to you. I took my mom to see the cardiologist today, and he’s livid. My mom’s blood pressure is up, and she might have a blood clot in her arm!”

“A blot clot? I don’t believe we stopped any blood thinners. I’m sorry to he-“

“No, it’s more than I’m sorry. I have to go!”

Crushingly perplexed, and a bit wounded I quickly reviewed my patient’s electronic chart. After all – I’m still a physician learner – maybe I had a horrible mistake. The chart confirmed that I had discontinued an antidepressant the patient felt wasn’t helping her, a bisphosphonate, and a statin. Though this patient had a life expectancy of less than 6 months and wouldn’t immediately benefit from these medications, I had checked with an attending and the now alleged livid cardiologist prior to stopping them.  I left a message with this specialist who denied being upset. The patient didn’t have a blood clot. Knowing that what I had done medically hadn’t caused the patient or her family any physical harm I next reviewed in my head what I might have said differently to provide anticipatory relief from panic. You might imagine that exercise was futile.

That day I spent some extra time re-centering my focus before getting in the car to my next destination. I couldn’t immediately pinpoint what had jolted me so, but I’m happy to say I was self-aware enough not to trust myself behind a wheel without a time-out and a latte.

What I have taken away from this experience is not that I shouldn’t allow these human connections to occur (it’s one of the hugest perks of the field,) but to not let them influence my expectations of human behavior.  It’s surprisingly easy for me to forget that the emotions and actions of those I encounter are unbridled and subject to rapid transformation, particularly when it comes to topics of life and death, particularly in the home setting. I think one of the biggest adjustments in transitioning from a family doctor in a clinic setting to a palliativist in the field is not the expectation that my patients won’t experience transformation, but I won’t observe it happen over a course of many years. The concentrated dose of emotions is as frustrating as it is rewarding.

My next telephone exchange with the daughter also happened to be during a moment of crisis, but her tone had changed to one of calm and gratitude. I didn’t let the prior exchange sour my satisfaction of being of service, but I also suspect that she’ll not always be so composed in the future. And it will probably have nothing to do with my medical skill or rapport, but because she is human and try as we may, we can’t prevent or anticipate all sorrow.

As I continue to reflect on my professional relationship with this daughter, I recall some advice from a mentor I once had thought was callous – to paraphrase, he told me that at the end of day the patient’s problem/illness is their own, not yours. I’ve come to realize that the wisdom of these words does not come in cautioning against connecting with other humans, but in recognizing that you enter and leave their lives for only a brief second, and that your opportunity to connect is meant to provide guidance, not ownership of their feelings or actions.