Category: Advocacy

Advocacy Insights Gained from My Husband’s Surgery

Advocacy Insights Gained from My Husband's Surgery

I nearly lost my husband last summer after his surgery for a hiatal hernia (when the stomach breaches into the esophagus). His recovery was not going well and I feared he would just slip away. Now, one year later I’m happy to report my husband is doing well; I am no longer worried he will die from post-surgery complications. Looking back on this experience, however, it is difficult to not feel angry and frustrated by all that went wrong.

Jump to my key discoveries

Here’s a snapshot of mistakes that were made:

During surgery, when CO2 was injected to open his body cavity for better visibility to the internal organs, some of the CO2 was injected just under the skin causing my husband to blow up like the Michelin Man. In recovery, his face was so swollen his eyes were sealed shut. Nurses and techs scrambled to press cold towels on his face to reduce the swelling. He spent a much longer time in recovery than anticipated as they waited for the swelling to decrease.

My husband has two titanium plates in his neck from a previous surgery that limits how far he can tilt his head back. This information was communicated and discussed with the surgeon prior to the procedure since my husband would need to be intubated during surgery. And yet, when he was anesthetized, his head was tilted beyond a limit he would normally tolerate causing excruciating neck pain once he awoke from the anesthesia.

Upon discharge from the hospital, my husband had a drain attached to his abdomen. The drain works on suction and its purpose is to draw fluid from the chest cavity, which is normal after surgery. Once home, my husband began experiencing agonizing pain in his groin area. He described it as a sharp, stabbing pain. The surgeon dismissed the concern as normal post-op pain. In any position – sitting, standing, walking – the pain persisted becoming quite debilitating. Nearly two weeks post-surgery, after yet another phone call to the doctor’s office, an x-ray image revealed the end of the drain was in the groin area, not the chest cavity as intended. The surgeon claimed the drain migrated. A nurse removed the drain, and the relief from the stabbing pain was immediate.

My husband has a history of back issues (two back surgeries, titanium plates in his neck) due to a degenerative spine. He has found regular exercise for his back essential as preventative therapy for back pain. The surgeon cautioned against exercises such as sit-ups post-surgery that would cause strain on the abdominal area. His concern was certain physical movements could undo the surgery. When my husband asked what exercises might be acceptable, he was told planks and walking. The surgeon refused to prescribe physical therapy claiming a physical therapist would just give him a kettle ball to swing around.

Clearly, mistakes were made. Incidents such as the CO2 and the head tilting were preventable medical errors. It’s difficult to know whether or not the drain migrated or was misplaced but it certainly was not where it was supposed to be, causing havoc with his internal organs. And the refusal to work with physical therapy professionals to develop an appropriate post-surgical exercise plan is simply beyond comprehension.

And sadly, research shows my husband’s experience is not the rare exception. According to a recent study in the New England Journal of Medicine, nearly one-fourth of hospital admissions (23.6%) result in an adverse event (defined as an unintended physical injury resulting from or contributed to by medical care that requires additional monitoring, treatment, or hospitalization, or that results in death). The authors note, this percentage is most likely much lower than the actual number given that many U.S. hospitals “…rely on voluntary reporting of adverse events.”

As difficult as this experience has been, it has given me much to consider during this past year when my husband was struggling post-surgery.

Here are some key discoveries I took away from this ordeal:

Choose elective surgery with caution.

  • Surgery is an invasive procedure
  • As we age, recovery can take longer, and be more problematic with unintended complications causing collateral damage
  • U.S. hospitals are under-staffed and are populated with more acute patients which can impact the quality of care
  • Consider surgery vs. no surgery in the context of impact on quality of life

Get a second opinion when a surgeon recommends surgery

  • Many surgeons are biased towards performing surgery
  • A second consult can provide more information to help with decision-making by offering another perspective, other options, or even confirming the initial recommendation
  • Sometimes finding an opening with a specialist can take months. In that case, schedule an appointment for a phone or video consultation. Insurance will often cover an additional consult, and for some surgeries, may be mandatory.

Find a surgeon with years of surgical experience on the specific procedure

  • Experience matters
  • A surgeon who excels at conducting the specific procedure will also know what to do when a situation doesn’t go according to plan

Be fully informed on the surgical procedure

  • Ensure the surgeon explains in detail how the surgery will be performed
  • Conduct your own research on the procedure. Why?
  • Provides context on what is supposed to happen versus what may actually occur
  • Provides perspective on potential side effects, secondary impacts
  • Provides insight on questions to ask the surgeon

Avoid holidays when scheduling surgery

  • If there are post-surgery complications, it’s important the surgeon is available for any questions and concerns. Holidays guarantee limited access and availability
  • Avoid scheduling surgery before a surgeon’s out of office or vacation days

Communication is essential

  • Ensure the surgeon is informed of any previous surgeries, and any current medications – discuss any potential impact on surgery or recovery.
  • Ask questions, share your concerns.
  • If you feel dismissed or not heard, find another surgeon.

My hope for everyone – if you must have surgery, all goes well. It may not be possible to prevent all adverse events but taking the recommendations listed above can pave the way for better outcomes.

Click here to read my Op/Ed from the San Diego Union-Tribune on this topic.

Gaslighting – Steps to Counter

I am pleased to share The Baltimore Sun published my Op-Ed on the important issue of Medical Gaslighting.

Most of us have all been there at one time or another. We show up at a doctor’s office with a medical concern that we’ve watched change, grow, or fester. Sometimes it’s a pain that may shift in terms of intensity or a nagging symptom that just won’t go away. And then, even if we’re lucky enough to see a physician, our concerns are ignored or dismissed. We leave the doctor’s office feeling confused, bewildered, and wondering what just happened.

Medical gaslighting is a practice that needs to stop. It causes harm to patients (here’s my Op-Ed in the Baltimore Sun on this important issue, also available here as a PDF). Education and training programs for healthcare professionals must be adjusted to address this issue. And patients must also be proactive with their medical care. Here are steps for patients to take:

  • Listen to your body – Trust your instincts when your body is telling you something is physically wrong
  • Take action – Do not hesitate, or second-guess as to whether or not to seek medical care
  • Be prepared – Brainstorm a list of questions related to your concern, write these down, and be sure to bring the list to your appointment
  • Be specific – If you have arm pain, is the pain in one spot or does it travel down your arm, when does it hurt – all the time or just at certain times (and what are those times), is it a sharp pain or a dull pain. The more specific you can be, the more this will help a physician with a diagnosis.
  • Bring Support – Bring someone with you to the appointment to take notes, to listen, and to debrief with you after the appointment
  • Get a 2nd, 3rd, or 4th opinion – If a physician isn’t listening to you, dismisses your concerns, or you are unsure about a diagnosis do not hesitate to seek a 2nd or a 3rd opinion from another medical professional.

Taking these simple steps may not stop medical gaslighting from occurring but will help the patient to be better prepared and to counter medical gaslighting when it happens.

When Friends Get Sick – Here’s How to Help

When Friends Get Sick – Here’s How to Help

After her diagnosis of breast cancer, a friend called Sinead to tell her what to expect when dealing with cancer. “You will actually lose some of your friends,” said the caller. Confused, Sinead asked, “Why would I lose some of my friends?” Her friend said, “For different reasons, but you will, and don’t take it personally.” Sinead then told me, “And I did. I lost two good friends who, from the day I was diagnosed, have never contacted me.”

At a Loss and Don’t Know What to Do

Losing friendships is common during a challenging illness. In fact, such loss was a recurring theme in my interviews with people facing a serious health challenge.

Why does this happen? As the caller suggested, there may be many reasons. Included among these might be guilt, fear, or maybe even something as simple as just not knowing what to do. If you are the friend wondering how to help, or worrying about doing the right thing, here are some ideas for what to do when friends get sick. Although the ideas may seem simple, these acts can make a world of difference to a friend in need.

What to Do When Friends Get Sick

Check-in. Stay in touch.
Don’t be offended if you don’t hear back. Illness changes the playbook. Someone diagnosed with a serious illness is dealing with a whirlwind of information, questions, and uncertainty. When a friend gets sick, navigating a path through a serious illness is stressful, as well as physically and emotionally exhausting. Your friend needs to know you care although she may not always have the time nor the physical or mental energy to respond. Don’t feel discouraged if you don’t hear back but continue to check in on occasion either with a card, e-mail, or even leaving a phone message. Letting your friend know you are thinking of her, and offering to help in some specific way, sends a positive message during a difficult time.

Send a card. Send flowers. Bring soup.
Such gestures are concrete ways of saying, ‘I care’ and ‘I am thinking of you,’ when a friend gets sick. These simple acts of kindness are deeply meaningful to a friend whose world has been turned upside down. Trained as a registered nurse, Nora worked as a case manager for 15 years helping patients access the care they needed. Comfortable with taking care of others, the tables turned dramatically one morning when Nora suffered a stroke during a visit to her in-laws in a small Vermont town.

Nora expressed surprise to learn that simple gestures could mean so much. “People have brought me … soups and … had lunch with me, gone for walks with me, things like that, it’s been really good.” Having experienced such kindnesses, Nora knows how important it is to do the same for others. “I had so many flowers and it just, that’s very uplifting … I just love flowers and so it’s made me think about if I have an associate, it doesn’t matter if they’re a good friend or just…someone I work with … a card … means so much, it really does.”

Offer to accompany the patient to doctor’s appointments and take notes.
Be an advocate. When patients reflect back on their experiences, having someone with them for doctor’s appointments to listen, to help with questions, and to take notes, is of significant value. Diagnosed with myelodysplastic syndrome and myeloprolific neoplasms, a blood cancer often referred to as pre-leukemia, Bill spent a lot of time in doctor’s offices both before and after the diagnosis. To help navigate these physician visits, Bill was fortunate to have his sister, who also happens to be a nurse. “My sister went to every doctor’s appointment with me. She read all the literature about my disease.”

Don’t worry about having a medical background; simply having someone else in the room to listen, to take notes, and to help with questions is so important. Although Sinead did not have this type of support during her own treatment, she recognized the importance of the role and willingly took on this responsibility for another friend diagnosed with cancer. “I took notes for her the whole time and helped her with different things and questions and where to go and how to find out information, all the rest of it.”

Find ways to meet daily necessities.
A friend of mine was diagnosed with breast cancer just this past year. We talked recently about the difficulty patients often have asking for, and accepting help, even when it may be needed. With one child at home, and a husband working full-time, meals from friends and family were vital to Sarah and her family when she was recuperating from surgeries. Sarah noted that asking for help was much easier when she could reach out to one person, rather than several.

There are a number of websites to help friends and neighbors coordinate meals for someone in need. You can help by setting up the site and letting others know it is available. Here are a few:

Share the Care and Care Calendar can extend to include other activities such as running errands, shopping, walking the dog, yard or housework.

Listen. Really Listen.
Now is not the time to tell your story. Sinead recalls meeting up with a group of friends shortly after her diagnosis, and saying, “I need to tell you something… I’ve just been diagnosed with breast cancer. And I barely had it out of my mouth, and somebody said, ‘Oh, my gosh, a friend of mine just went through that and blah, blah, blah’ and the rest of us just sat there and listened to her story. .. and then eventually I got to talk again. And that didn’t just happen once.”

When battling cancer, or any other serious illness, there is a lot of information to process, decisions to make, and new emotional territory to navigate. Your friend really just needs someone who will listen. Listening without judgement, opinion, or interruption is an art that takes practice but is critically important when friends get sick. Remember to keep the focus on the patient.

Recovery is a Process.
Recovery does not mean the patient journey is over. Even when a patient’s surgery is successful, or the cancer is in remission, or she has been declared cancer-free, there is more. Residual physical and emotional challenges are common. Jaime speaks poignantly of her experience with life after a serious illness.

Jaime endured nearly a year of invasive treatments and procedures, including a hysterectomy, based on misdiagnoses. By the time of Jaime’s diagnosis with colon cancer, the cancer was Stage IV with metastases to the liver. Surgery appears to have been surprisingly effective and Jaime is in recovery mode. However, when we spoke, Jaime confided,

It’s really difficult because I feel like I can’t plan anything, like, going on vacations or … just really life in general. And that sets off the depression, and that I think is the most difficult thing to, to work with, is the depression and the anxiety of the ‘what if?’, just waiting for the other shoe to drop. And ‘oh, no, we didn’t get all the cancer, there’s a recurrence’… that’s how it’s affected the rest of my life, I think, more than anything else is just fear. “And, so I’m trying to cope with that… a lot of times, people will say okay, well, you’re cancer-free now, so … everything goes back to normal. Not so much. [LAUGHS] It’s almost, I would almost rather go through treatment and knowing … what I’m dealing with then, ‘you’re disease free’ and having that fear in the back of my head.

As a friend, recognize the validity of the recovery process and continue to reach out, show kindness, and listen, really listen.

Step Up and Take Action

A friend’s serious illness is the time to step up and show the meaning of friendship. There are many different ways to help when friends get sick – some grand and others fairly simple – each can have a positive impact and can be meaningful. Take the time to ask, listen, and act – don’t be the friend that disappears.

Learn more from patients’ experiences. Explore the value of advocacy and support when getting a medical diagnosis as well as learning how to ask for, and accept support during a serious illness.

*Quotes in this post are from interviews conducted for my book, Navigating Illness: The Patient Experience, a work in progress. Names were changed upon an individual’s request.

Asking For and Accepting Help During a Serious Illness

Asking For and Accepting Help During a Serious Illness

Support is essential to help navigate the many challenges of a serious illness. Illness can bring difficult treatments, painful side effects, and patchy recovery periods. Asking for and accepting help, however, is often complicated because we value our independence.

Admitting a need for help is acknowledging our sense of self has changed. This is a hard reality to face. And yet, based on interviews with people facing serious health challenges, this journey is best managed with support.

These powerful narratives, based on patients’ experiences, deliver critical insights for times of serious illness.

Asking for Help During Times of Serious Illness

Jackie’s breast cancer diagnosis changed quickly from a relatively straight forward procedure to Stage III-A cancer with activity in the lymph nodes requiring both chemotherapy and radiation. As a result, the number of people Jackie informed about her cancer expanded.

Although Jackie has a large family that live close by, as a single working mother she knew she would need additional help … “and the next thing I knew, people are bringing food, especially after the surgeries and I’m getting cards and e-mails or texts of support, I mean it was huge.” Asked what this type of support meant to her, Jackie replied: “It meant everything.”

Brea required brain surgery for a malformation that was causing life-threatening symptoms. As a mother of two young children, Brea knew she would need help:

…. this was something I couldn’t tough out, and I had to ask for help, and that’s hard….That’s hard for me … [but] I had to. I had no choice… I had a two-month-old, a two-year-old and, it wasn’t just me. I had to think about them, and I had to think about my husband, who had to eat. [LAUGHS] He doesn’t cook. And, so I had no choice. I had to ask for help.

In both of these situations, asking for help provided the support needed to allow Jackie and Brea to focus on treatment and recovery during a serious illness.

Accepting Help During a Serious Illness

A stroke turned Nora’s life upside down. Normally a very active and independent person, Nora’s stroke delivered a sudden and dramatic change. Additionally, in her job as a nurse Nora takes care of others. Nora found it a difficult and uncomfortable challenge to be in a position of needing, let alone accepting, help.

When Nora returned home from the rehabilitation center friends would offer to drive her places, go for walks, and bring food. At first, she was reluctant to accept these offers of support. But this changed, as she told me:

I’ve allowed myself to do that because they, they wouldn’t be offering if they didn’t want to do it … I’m really independent, I don’t like to be a burden to people, so that’s been, … it’s just a different experience for me.

Accepting help is difficult because it is an admission that things are not right.

Joseph’s sarcoidosis, an autoimmune disease where tiny clumps of inflammatory cells negatively impact different parts of the body, often sent him to the hospital. During these hospital stays, Joseph’s friend Dave would sit with Joseph whether he was awake or not. Joseph would try to send him home, “there’s no reason to come here because I’m going to be asleep most of the time.”

And yet, when Joseph would wake, “There’s Dave setting in the corner.” Joseph adds: “…at the time it just felt like this was ridiculous, why doesn’t he go home to be with his family. But then you realize how much that was an aid to you…sometimes the help that I received, I only understood the power and impact of it retrospectively….it was critical.”

Support Provides Relief for Caretakers

When Lena began chemotherapy for Stage IV colon cancer, she considered her job “was to take care of myself and rest, and that’s what I did.” As the chemo continued, the effects got worse and Lena would be knocked down for days.

During treatment, Lena had three children still living at home, and her husband worked full-time. As her husband noted, “how am I supposed to keep working and take care of you and take care of everybody else?” So when people offered to help, Lena’s husband gratefully accepted.

Meals were delivered two to three times a week from October to June. Four women took turns each week with the laundry until Lena’s children took over this responsibility. And another woman came over to clean just the first floor of the house. As Lena observes,

…it’s just how people, how people want to help, and they just so want to help and I think it’s important to let them help. Because I know people that keep things to themselves and don’t let people know what’s going on with their family and don’t know how to accept the help. And, we did. We just let anybody do whatever they wanted to do, and my, cancer battle was a very public battle with everything that my husband would write on, the Caring Bridge and everything. It was, we were very open with it, and I think people appreciated that and felt a part of it.

Accepting offers of help provides much needed relief to the primary caretakers of those with serious illness.

5 Points to Consider When Help is Offered

  • People offer support because they genuinely care and want to help
  • Offers of help provide needed relief and support, not just for the patient, but caretakers and family members as well
  • Support allows the patient to focus on treatment and recovery
  • ‘Share what types of support may be needed. People may offer to help but don’t know what needs to be done. Others may not offer because they don’t know what may be needed.
  • Accepting help can provide unanticipated gifts both for you as well as those providing support.

When illness strikes, it is difficult to acknowledge that help may be needed, that you can’t do this all on your own. Support during a serious illness, however, allows the focus needed to optimize treatment and recovery.

* Quotes in this post are from interviews conducted for my book, Navigating Illness: The Patient Experience, a work in progress. Names were changed upon an individual’s request.

Getting Medical Test Results? Bring Someone With You

Getting Medical Test Results? Bring Someone With You

Receiving medical test results for a serious illness is like a sucker punch. Illness rattles perceptions of self and identity, forever. Patients describe feeling “overwhelmed,” emotionally overloaded, at the time of diagnosis. According to patients, having someone there when getting medical test results, is invaluable.

Physicians differ in their skill and approach to sharing significant medical test results. And patients differ with how they hear, interpret, and absorb this information. It is an emotionally laden exchange, packed with opportunities both realized as well as missed.

When Getting Medical Test Results, Bring Someone With You

During interviews about the patient experience, people mention how valuable it was to have someone with them when meeting with the doctor and getting test results. This feedback surfaced during many interviews conducted to examine the role of advocacy and support. The value of having someone in the room is not just for emotional support, but to help process the information, and to assist with questions.

Sinead, a breast cancer survivor understood the importance of this role. When a friend asked, she was willing to take on this role. As she knew from experience, “When you’re getting so much information, you need a partner there who’s going to listen and take notes and say, okay, this is the next step.” Learning how to ask for help, as well as how to accept support, are important skills to adopt during times of illness.

Consequences of Going Alone

Jackie would learn from her own experience the value of bringing someone with her when meeting with the physician. The appointment was to follow-up on biopsy results after a diagnostic mammogram showed some architectural distortion. Previous abnormal test results had turned out to be micro calcifications, benign, so Jackie fully expected a similar report.

Jackie scheduled the appointment so that she could stop by on her way home from work. This time, however, the biopsy came back positive for cancer. The radiologist did not mince words in telling Jackie the diagnosis. She was handed a big book on breast cancer, and the next thing she knew she was talking with a surgeon, getting registered as a new patient, and being asked if she would like a breast lift with her reconstructive surgery.

You’re just shocked, stunned. And again, I had been working all day. I didn’t even think of bringing someone with me. And I look back now, and I really, really wish I had. You know? I mean, for God’s sake, I had a biopsy…I should have had someone to just be with me because I really, I didn’t know what to think.

The medical test results from the biopsy suggested the cancer was small, non-aggressive, so the recommended next step for Jackie was a lumpectomy rather than a mastectomy. Believing that her diagnosis was relatively straightforward, Jackie arrived alone to learn results from the surgery.

However, these test results indicated the tumor was bigger than anticipated, and three of the sentinel nodes tested positive for cancer. It was a very emotional meeting because her cancer was now at a Stage III-A, rather than a Stage I. She would need not only another surgery but most likely both chemotherapy and radiation.

When Jackie went for the results from her second surgery, this time she brought a friend. “I was very grateful for my friend because all of a sudden things at that point just started to not look really good. I really started to worry.”

5 Ways an Advocate Can Help

A serious illness is a journey, requiring many kinds of support at various points along the way. A diagnosis is just the beginning, so be sure to bring someone with you to help absorb the information and identify next steps. Here are five ways that having someone with you can be beneficial during visits with physicians, particularly when reviewing medical test results:

  • Brainstorm before the visit to identify questions.
  • Take notes during the meeting.
  • Prompt you during the meeting, if needed, on items to ask/discuss with doctor.
  • De-brief after meeting with the doctor.
  • Identify next steps to take.

If you don’t have someone who can join you for the doctor’s appointment, use these same points to advocate for yourself more effectively. When meeting with a doctor alone — think of questions ahead of time, write them down, take notes during the meeting, ask for clarifications, and ask the doctor to identify the next steps (which you will write down!)

*Quotes in this post are from interviews conducted for my book, Navigating Illness: The Patient Experience, a work in progress. Names were changed upon an individual’s request.