Archive for the ‘Cancer’ category

Sitting with Patients: A Lesson for Doctors

March 24, 2017

As Colon Cancer Awareness Month draws to a close — AND as the House of Representatives is poised to vote on the terrible AHCA — I’m reposting this. It has to do with any kind of hospitalization — or even office visits.

It was 2001. After being sick for awhile Melinda rushed me to the ER. They kept me, soon saying, “This is your diagnostician” and “This is your surgeon.” And “Cancer…” I had meatball surgery since there was no time to prep, and it was almost too late. Then a week in an induced coma. Next was a CCU room. I had tubes running in and out of me, and I still didn’t know if I would live. Melinda had to get some work done, so I was alone and crying softly to myself when my surgeon came in on her rounds. She had stood before, but this time she pulled up a chair, sat down, and held my hand. I don’t know if she was there for seconds or minutes or an hour, but I felt better. I had hope that I’d have a future.

I had never seen someone so yellow.

It was as if someone had taken a highlighter to the whites of her eyes and coated her skin with a layer of mustard. In actuality, the cancer in her colon had crept to her liver, where it blocked bile from taking its natural path out of the body, causing the ominous yellow chemical to spill into her blood and tissues. She had left the hospital two weeks ago, hoping to die at home, but came back with worsening pain and bloating in her belly — and because she couldn’t stand to look at herself in the mirror.

“Doctor,” she said softly — it was a title that still didn’t feel quite comfortable to me, a newly minted doctor, especially coming from a patient several decades older than me. “You remind me of my nephew.”

She asked me to sit for a few minutes and, shamefully, I hesitated. I had eight more patients to see before rounds and was already running behind. But I sat — listening to a dying woman’s fondest family memories, my mind racing through a seemingly endless list of boxes I had to check that morning. When my pager went off five minutes later, I excused myself, promising to return in the afternoon to finish our conversation.

But I didn’t.

There were new patient admissions. Emergencies on other floors. Notes to be written, consultants to be called, outside hospital medical records to be procured.

When I got home that night, I kicked myself for forgetting to stop back to see her. I briefly considered going back to the hospital but, exhausted, told myself she’d be asleep by now and vowed to arrive early the next morning to spend extra time with her.

She died that night.

The most draining aspect of medical training, it turns out, is not long hours, brash colleagues or steep learning curves — it’s the feeling that you’re often unable to be there with and for your patients in the way you want, in the way you’d always imagined you would be.

For hospitals to run efficiently, it is widely thought that they must operate like companies. There’s a certain number of patients to be seen, doctors to see them, diseases to be managed, procedures to be performed, and hours in which all this must occur. For patients to feel cared for, we must treat them like family — with all the time, energy and compassion that entails.

It’s a tension with which doctors at all levels of training struggle. But the problem may be most acute for new residents who are generally the ones expected to gather, relay and document patient information; to enter orders and coordinate care between medical services; to be the first to respond to patient, family and nursing queries.

So far, residency educational reform has focused on the quantity of hours worked, not necessarily improving the quality of time spent at work. But limiting how long residents spend in the hospital may have actually exacerbated the problem. By squeezing the same clinical and administrative work into fewer hours, do we inadvertently encourage completion of activities essential in the operational sense at the expense of activities essential in the human sense?

It’s no secret that trainees now spend less time at the bedside than ever before. Residents today spend eight minutes per day with each patient — or about as much time over all seeing patients as they do walking around the hospital, and a quarter as much as they do sitting behind a computer screen. The next wave of reform must focus on understanding how best to ensure resident time is spent on direct patient care and meaningful clinical activities.

Part of the answer may be reducing individual workload by training more residents. But, without extending already lengthy training programs, this also carries the risk of precluding residents from managing enough clinical encounters to graduate as competent independent physicians. More promising reforms are those that allow trainees to focus on the types of activities they chose careers in medicine for by off-loading or eliminating other activities. These may include: improving the ease of communication with nurses and consulting medical services; enlisting medical scribes to assist with documentation; minimizing admission and discharge paperwork; streamlining transitions to outpatient care; and automating certain routine procedures and processes.

On some level, though, efficiency-empathy trade-offs are an inevitable and inherent tension in medicine — a function of busy hospitals with complex patients and limited personnel and resources. But I wonder also if this is a trade-off we too readily accept and whether the pendulum has swung too far toward the alter of efficiency.

Surely patients want to be seen and treated in a timely manner, but when we sacrifice empathy for efficiency we fuel what lays at the core of patient — and physician — discontent with modern medicine. We hide behind buzzwords like “patient-centeredness” and “shared decision-making” without being able to offer the time that gives these terms true weight. Ultimately, reconciling this tension may mean reconceptualizing “efficiency” to include the tremendous value that exists in having more time to spend with our patients.

When I think back to that morning with my patient, and many mornings like it, terms like efficiency and productivity seem to lose their meaning. I think of the countless opportunities for compassion I squander every day in pursuit of something far less meaningful to patient and doctor. And I think, next time, I’ll sit.

Dhruv Khullar, M.D., MPP, is a resident physician at Massachusetts General Hospital and Harvard Medical School. Follow him on Twitter: @DhruvKhullar.

https://well.blogs.nytimes.com/2015/03/19/the-importance-of-sitting-with-patients/

Heart…

November 16, 2011

Our next door neighbors are more than people inhabiting the space next to ours. They’ve been here for about fifteen years. The kids have grown up in front of our eyes, and we’ve been a part of their lives since before they can even remember. These people are friends, extended family.

Gloria, the mother of the woman next door, grandmother to the kids, is dying. She has advanced untreatable lung cancer. It’s metastasized throughout her body. She’s in home hospice, and soon she’ll be gone.

Gloria is only in her early 60s. She and her husband Henry (Enrique in Spanish — she’s the only one who calls him Ricky) have been together since junior high, and they were friends even earlier than that. At a recent family party I checked in with him: he told me that they haven’t had enough time together even after fifty years. Their love is sweet and tender, and the impending loss is heartbreaking. In fact, it’s so deep that it wouldn’t surprise me to see Henry die of a broken heart soon after Gloria’s passing.

+ + + + + + + + + +

I got several requests on Facebook today. The message was to post a heart as a status update. No explanation — just a heart. The idea is that this is a simple, silent sign of support for women with breast cancer.

I can’t do it.

It seems to me that there’s a sort of hierarchy of cancers. Breast cancer. Sure, we can run, walk, wear pink ribbons and all that good stuff. We can urge women to get mammograms. And I’ve done all of that and will continue to do so. Heck, even my golf bag has a pink ribbon on it.

But hmmm… I had colorectal cancer. I’m a statistical miracle. By the numbers I should be dead, but I’m a ten-year survivor. But I have yet to see an event like a Revlon colorectal cancer event. Same for prostate cancer. And lung cancer? Even after non-smoking Dana Reeve’s death, there’s a real tendency to blame those with lung cancer for their disease.

So… even though my heart goes out for those with breast cancer, my heart is with them, don’t expect to see a ❤ as my Facebook status.

Cancer: my story… and some unsolicited advice

August 30, 2011

This week I’m celebrating ten years as a cancer survivor. I honestly believe that God has given me a responsibility of ministering to others with cancer along with my own personal celebration. Yesterday morning I met a man whose spouse is undergoing treatment for cancer, and later in the day Melinda shared with me that a colleague friend has been recently diagnosed; I wrote this letter to the friend and his spouse. I post it here in the hope that it might help someone else.

Dear friends,

Ten years ago this week I was discovered to have colon cancer. It wasn’t through any standard diagnostic procedure. I was feeling really sick (but I thought I’d get over it in time). But Melinda was worried about me, and she rushed home late at night, interrupting a business trip (fortunately she was driving, and only up in the Central Valley). She took me to the ER. Pretty soon I was going through the entire battery of tests, then meeting the woman who was to become my surgeon. I was in the hospital for three weeks after having a whole lot of my guts removed (and a week in a drug-induced coma for the ultimate in pain management). When I went to see my surgeon for my first follow-up visit, she said, “You weren’t ready to hear this before, but you were only two to three days from being inoperable.” Of course she was right!

Who’s ever ready to hear any words that have to do with ME or someone I love having cancer?

After a period of healing from my surgery, I then underwent chemo since there were cancer cells in several of the lymph nodes that were removed during my surgery. I hated it. It made me sick and weak. My veins got thin and I had to have a chemo port inserted. I had what’s called “chemo brain” (the chemicals made it hard for me to think even to the point of doing day-to-day activities). I became light sensitive and had some other side effects. But if I had to do it again, I’d say, “Let’s get started!”

Now, even 10 years afterwards, I still see the oncologist every six months. I have to have bloodwork a week before I see her — at which time my anxiety builds and builds. Fortunately, with only one exception, she is able to say to me, “Perfect! See you again in six months.” (The exception turned out to be nothing, but it was scary getting to the point where we knew that.)

So I didn’t die at the outset when I easily could have. I didn’t die after the surgery, which was also a fairly strong possibility. Also, the statistical prognosis for my kind of colon cancer isn’t good: only a 50% five-year survival rate. And yet… here I am, alive and kicking!

Things that help are: having [your loved one] around; having a back-up person when [loved one] needs a respite (and [loved one]: taking an afternoon-off break when you need one); keeping a positive, affirmative attitude even on the worst days (I know that sounds contradictory, but it’s important); and keeping your sense of humor. [After I’d been home for several days, still feeling lousy and weak, Melinda brought in the DVD of “Shrek” which I hadn’t seen yet. It made me laugh out loud. It was then that I knew that I was going to live. I hadn’t been sure up until that point.]

If your treatment is going to involve IV chemo, I really recommend getting a chemo port at the outset. It’s a little one-way valve that is put in your chest, and they can then administer the drugs through that instead of stabbing you every time you have to have a session. It often isn’t offered until after patients start having problems, but I strongly believe it should be discussed up front. Talk to your oncologist about it. My other suggestion is to drink water; you can’t drink too much of it, and it keeps your veins plumped up and washes out many of the impurities. Do what the doctors say — and listen to the nurses, because their help can be invaluable. And DON’T believe statistics or anything else negative. Every person is an individual, not a number! Oh: and remember to enjoy every day because — cancer or not — life is short.

If there’s anything Melinda and I can do for you — including virtual hand-holding from afar — just let us know. We are big believers in prayer and positive thought, so know that we’ll hold you that way too. You aren’t alone.

Strength and love,
Sonnie

p.s. I also recommend a sweet little book called Kitchen Table Wisdom. I’d send you my copy, but I still pick it up and read from it…

My story (the long version): Colorectal Cancer Awareness Month

March 25, 2010

In life, there are some things that develop over time. For example, my faith and beliefs have developed over the course of my lifetime, and I hope that they will continue to evolve for the rest of my life. (I know that some people have a Paul-on-the-road-to-Damascus conversion experience and become instantly “born again” but this is not part of my story.)

There are other things that happen quickly–even instantly.

For example, I was in a car accident in 1977. A truck crossed over the double yellow line on a curve as I drove along a country road. My little Dodge Colt was crushed, and I sustained life-threatening injuries. The long-term consequences have been both physical and psychic for me. But that’s only an instance, and not the story that I want to tell here.

In August 2001 I went through a couple of weeks of not feeling well. I was 49 years old, and I thought that the constipation that I was experiencing was a sign of my impending middle age. Despite this, my then-partner (now wife) Melinda and I went out to dinner on Friday evening with some friends. I “sucked it up” and enjoyed our time together the best that I could, but on our drive home I started feeling worse and worse, mentally curling up in a ball on the floor of the car as Melinda drove. For the first time I told her that I was feeling sick. When we got home, I went to bed and stayed in bed throughout the weekend.

On Monday morning Melinda left on a business trip. She was driving, leaving our Southern California home to go to the Bay Area by way of the Central Valley. She checked in with me several times during the day, and I assured her that I was okay, despite the fact that I felt lousy. That night at about 8:30, after having dinner with my mother in the Fresno area, Melinda called again. As we talked, she decided that she was going to come home right then. I told her that wasn’t necessary, but she insisted on making the 3-1/2 hour drive right then.

By the time she walked in the door my situation had significantly deteriorated. I was weak and nauseous. I was standing over the bathroom sink thinking I was going to vomit when she greeted me; she went to do something (get her suitcase? I don’t know) and I immediately passed out cold. When she came back moments later, she was standing over me: “Are you alright?” I heard her ask. Then, “That’s it! I’m taking you to the emergency room.” By then, I was done protesting.

Off we went. It took little time to get there, and despite a busy ER waiting room, little time to get me in to see a doctor. I introduced Melinda to the doctor as my legal domestic partner, and then my mind wandered off somewhere else while they talked about what was going to happen. Pretty soon I was undergoing tests, tests, and more tests; pretty soon, I was being introduced to first a diagnostician and next hearing, “This is your surgeon.”

Surgeon. Tumor. Cancer. Colon cancer.


These are not words that anyone hears on an everyday basis, particularly about themself. It was a shock. But I had no time to do much processing.

Soon I was being anesthetized. I was saying goodbye to Melinda, telling her I love her, telling her, “I could die, you know.” Trying to pray, to recite the 23rd Psalm–but the drugs were working and I forgot the words.

I was in the hospital for three weeks. My colon, appendix, ovaries, and ten lymph nodes were removed. The kind of tumor I had is called an “apple core lesion”–a tumor that wraps itself around the outside of the colon and chokes down on it.  Because I was in distress when I came to the hospital, there was no time to prepare properly and my surgery was basically meatball surgery, performed in the middle of the night. After the surgery, I was taken to some mystery place where I was kept in a drug-induced coma for a week as a pain management measure. When I was brought out of the coma, I was still intubated–something that is painful and also frustrating because it makes communication impossible. I had what Melinda called a Christmas tree attached to me: lines of every color running into and out of me. The second and third weeks were spent in a two-bed room, but I was fortunate to not have a roommate until the very last morning I was there. Because my ovaries were also removed I went into instant menopause, and in addition to the post-surgical pain, I experienced the hot flashes that go with that. I was allowed to take a shower–finally–after two and a half weeks. As you might imagine, this was the best shower I have ever taken!

Later, at my first follow-up visit, my surgeon would tell me, “You weren’t ready to hear this at the time, but you were only two to three days from being inoperable.”

I was released from the hospital the night of Thursday, September 6. Getting home was so exhausting that I slept for most of the three following days. We’d been having the house painted when I went in to the hospital. I was anxious to see it, but I wasn’t able to gather the strength to go outside until Sunday afternoon; I walked out the back door, down the driveway, and across the street, where I sat down on the curb and admired the colors I had selected. It then took me 20 minutes to regain enough strength for the “return trip.”

On Tuesday, the world blew up. September 11, 2001. I got out of bed and wandered into the family room where Melinda had the television on; I stood there and watched as the plane flew into the second tower. I believe that the nightmarish experience I had was different from most people’s–since I was still taking the maximum allowable prescription of painkillers.

For almost three months I had to have a visiting nurse come to the house every day for wound care. I then went to the hospital every day for wound care for another two months. When my wound was sufficiently healed, I started my chemotherapy regime, which went on for another ten months. I saw my surgeon every week. I bonded with her. And then it was time to be discharged as her patient; this was hard, saying goodbye to the woman who had saved my life, who was compassionate enough to have held my hand on a particularly bad recovery day. I was handed off to my oncologist.

I still see the oncologist every six months. I go in and have bloodwork a week before my appointment. Even though most of my appointments have gone smoothly (“Perfect! Everything is perfect. See you in six months.”) that week is a time of building anxiety. Almost half of all patients thought “cured” of colon cancer develop recurrence within five years. And yet, here I am–8-1/2 years post-cancer, and going strong.

Think of George Bush’s spokesperson Tony Snow. Despite his politics, I rooted for him and prayed for him every day. I wrote to him, and he wrote back. We had become part of a strange family. I cried when he died.

But there is never a day that I don’t think about it, never a time when it isn’t part of me. I have a “zipper” scar that runs up my midsection. I have dietary restrictions and weird digestive issues. I get nervous when my stomach growls. My body may be cancer-free, but my soul will always be victimized by this disease.

The irony is that I was 49 years old when colon cancer struck me. I had every intention of going to the doctor and having my first colonoscopy in 4-1/2 months when I turned 50. I just didn’t get that chance.

My conclusion though, is that you do not want this to happen to you or to anyone in your life. Colon cancer is the #2 cancer killer in the United States, but it is also the most treatable. The test that seeks out the disease also allows the doctor to remove potential cancer growths right then and there. So if you’re 50 or older, have a colonoscopy. If someone else you know hasn’t had one, talk to them–share my story–and make them get one. Everyone who has had one says that the prep is worse than the test itself–and it is. But the prep is nothing–nothing–compared with what I went through and continue to experience.

Be well.

As we say on Twitter, #beatcancer because #cancersucks

BTW

March 29, 2007

I did see my oncologist on Monday. She said my favorite words, “Everything is perfect, perfect, perfect. See you in six months.”

Phew!

Message for Tony Snow

March 29, 2007

Hi Tony,

I am a colon cancer survivor.

I am fortunate to be alive. I, too, had all of my colon removed as a result of my cancer at age 49, and I also had to go through six months of chemotherapy. I haven’t had a recurrence after 5-1/2 years. Last year, though, I had a scare–so I went through all of the dread. But I was lucky that it was a mistake, and I’m fine. I am truly sorry that this wasn’t the case with you.

Tony, our politics couldn’t be farther apart, but that just isn’t important when it comes to human issues like the one that you are facing now. My prayers are with you, because I know that they help–because I had people praying for me, and they helped me through that very rough time in my life.

Sincerely,
Sonnie

Message to Elizabeth Edwards

March 22, 2007

Bless you, Elizabeth.

I am a 55 year old female 5-1/2 year colon cancer survivor.

I see my oncologist on Monday for a “routine” follow-up appointment, which I have every six months. I have a blood draw a week or so before my appointment, and then I go to see her. I spent the week with all of this internal high level of anxiety and dread–while pretending that everything is “routine” on the outside.

So far, so good.

But I know that things could be different at any time.

And you have gotten the news that I most fear.

Here is my unsolicited advice: Don’t listen to anything that the naysayers have to say. No one can live one person’s life except the person living it. They don’t know what you’re going through. And it’s none of their business.

May your treatment go well.
As Lance Armstrong says,
“Live strong!”

God bless you.