Author: Laurie Reed

Can Virtual Care Replace In-Person Care?

Posted on December 9, 2020 by - Communication

Can Virtual Care Replace In-Person Care?

Among the many changes to our lives imposed by the pandemic, one potentially positive offering is on-line doctor appointments. Such visits are variously called: virtual health, telemedicine, telehealth, or virtual care. The patient connects over the internet either through a computer, tablet, or mobile phone rather than meeting with a doctor in the office.

At first glance, there’s great appeal to this option. Virtual meetings eliminate drive times, parking hassles, and long stints in crowded waiting rooms. The neurologist monitoring my multiple sclerosis is based in Portland, an hour and a half drive, one-way, on a crowded interstate. Her office is in a very large and busy medical center, not a place I want to spend any time during a pandemic.

Some Pluses and Minuses of Telemedicine

The feedback on telemedicine from patients and physicians in social media and healthcare literature is mixed. Some patients feel communication with physicians has improved with on–line visits citing more personal interactions and longer appointments. Many patients with chronic conditions are particularly enthusiastic with virtual options. Such patients may experience issues with limited mobility or a desire to limit in-person interactions during Covid-19.

The significant downside of telemedicine is the technology. Not everyone has access to high speed internet, particularly patients that live in rural areas. And the costs associated with purchasing high speed internet is another barrier to access.

My First Telemedicine Visit

As a new patient, my first meeting with the neurologist in Portland occurred at the end of 2019. Due to Covid, our spring appointment moved on-line. I was somewhat nervous about this initial virtual visit.

The logistics of the technology was certainly manageable, just a bit intimidating. I was ecstatic not to have to make the hour and a half drive and to avoid the exposure to other people. Given this was only the second appointment, I was also hopeful that we might be able to advance the relationship in some small way.

In the end, I found the telemedicine interaction disappointing. The visit, while efficient, lacked a personal connection and our time felt abbreviated. More importantly – the appointment was incomplete. Virtual connections are left wanting by their very definition. There is no physical exam, no opportunity for a physician to palpitate, probe, and measure the physical well-being of the patient. (More discussion on the importance of touch in an upcoming post.)

What is Missing…

Here are some of the hands-on measurements that typically occur at each of my in-person neurological appointments:

  • Blood pressure
  • Eye exam: In a darkened room, the physician shines a small flashlight into each eye. This light reflex test can detect potential nerve damage.
  • Nine-hold peg challenge: Using only one hand, I insert nine pegs into small holes on a wooden board and then must remove each of the pegs individually. This is a timed test and measures finger dexterity and eye-hand coordination both indicators of any neurological complications.
  • 10-metre walk test: I must walk as quickly as possible to a mark 10-metres from my starting position. This is also a timed test and measures comfort and gait speed.
  • Reflex tests: A reflex hammer tapped on my tendons tests whether the reflex response is stronger than normal or more frequent.
  • Babinski Sign: The physician scrapes a sharp blunt object along the bottom of the foot. In MS patients the big toe moves up and the toes fan out. Infants have this neurological reflex but then it disappears. When this reflex is present in adults, it is an indicator for MS.
  • Pin pricks: A sharp object such as a pin pricked on different points of my feet, legs, hands, and arms tests the integrity of the nerve fibers.
  • Tuning fork: A vibrating tuning fork is placed on different points of my feet and I must report when I can no longer feel the vibration.

… And Why it Matters

NONE of these assessments happen in an on-line visit with a doctor. While each of these tests are important to the initial diagnosis of MS they also provide insights for physicians when monitoring the progression of disease. Measuring change has tremendous value since nerve damage can occur that is not always apparent to the patient.

For the past few years, I have noticed a difference in my ability to feel pin pricks and to accurately tell when the tuning fork stops vibrating. When the phrase Babinski Sign showed up on the notes after one of my routine visits, I had to look up what it might mean.

Virtual Care Does Not Replace In-Person Visits

Overall, I am extraordinarily fortunate. My MS has remained stable with few physical manifestations since I was diagnosed in 1993. For patients where MS is more active, physician monitoring and management of the disease is crucial. And the need for regular physical examinations extends across multiple disease states – cardiac health, cancer, diabetes, and other neurological conditions such as ALS and Parkinson’s Disease to name a few.

Pronouncements heralding virtual care as here to stay and the future of medicine are premature. Such visits are a great convenience but should only serve to complement not replace in-person care and treatment. The physician-patient face-to-face meeting is a hallmark of quality healthcare and physical exams are an essential component.

I look forward to the day when I can safely meet with my neurologist in person.

So, tell me – what are your experiences with on-line doctor visits? – I’m very curious to hear how it is going for you.

Finding a Doctor After a Move

Posted on October 27, 2020 by - Healthcare

Finding a Doctor After a Move

Just over a year ago my husband, Tom, and I arrived in the Pacific Northwest after many years of living in various places throughout the Midwest. We were in search of better weather – relief from icy cold winters and hot humid summers.

Besides weather, two other major considerations for relocating – to be out west and in a college town. One significant factor we didn’t consider — healthcare.

I don’t believe we were completely negligent. We knew there was a hospital given we had visited with our son on Thanksgiving Day just the year prior to our move. The hospital was clean, the ER care efficient, and billing wasn’t a hassle.

Additionally, we asked a friend who had grown up in this particular place about the quality of healthcare; there weren’t any negatives or red flags. Our insurance provider even provided us with a list of recommended physicians that accepted our insurance plan.

Active Participants in Healthcare

I never suspected that finding a physician would become the major stumbling block to establishing healthcare. The vast majority of physicians in this city are aligned with either one of two physician groups (one of the groups is affiliated with the hospital.)

Tom and I take care of our health by exercising regularly and eating a well-balanced diet. Despite our best efforts though we both have chronic medical conditions. For Tom it’s managing high cholesterol and for me it’s Multiple Sclerosis. Therefore, we expect our healthcare providers to have the expertise to manage such medical conditions.

As senior citizens, we also desire healthcare providers with both the knowledge and the experience on medical changes that occur with aging – bone health, metabolism, and cardiovascular issues.

We consider the relationship between a provider and patient a partnership. In our experience, the practice of healthcare improves when there is good communication and trust, factors dependent on the continuity of care. Such care begins by establishing a health baseline; such a baseline provides context for whether or not any changes should be a concern.

Difficulties With Finding a Physician

Tom was the first to begin the physician search and ran into obstacles immediately. The physician group not directly related to the hospital would not accept new patients with Medicare. And the hospital affiliated physician group wouldn’t let Tom choose a physician from the list of physicians recommended by our insurance plan.

In fact, the physician group selected his provider, a D.O. (Doctor of Osteopathic Medicine). My husband did not have a choice. There was no opportunity for him to select a physician based on patient recommendations, physician specialty, experience, or compatibility. After one year, Tom’s physician moved into a new role. So much for continuity and having a baseline. Tom now begins again, this time with a newly assigned Nurse Practitioner as his primary care provider.

More Difficulties with Finding a Physician

My experience with finding a physician presented slightly different challenges. I was determined to select a primary care physician based on my criteria – Internal Medicine and female – from the list provided by our insurance company.

After a few phone calls, it became clear I could not make an appointment directly with any of the physicians in the group affiliated with the hospital. It was mandatory to use their Find a Doctor phone system. And apparently the only primary care providers available to me as a new patient were either D.O.’s or Nurse Practitioners.

I finally found a physician from the physician group not affiliated with the hospital. The receptionist on the phone though wasn’t sure whether this physician was accepting new patients. I had to wait several days for a return phone call. Fortunately, this physician was accepting new patients, however, the next available appointment was not for another NINE months. I said I would wait.

My first appointment was informational only – no annual exam. When the appointment finally happened, I discovered the reason for the long wait — she only works part-time. I did mention our difficulties with finding a provider and she informed me there is a shortage of primary care physicians. Our small city not only has challenges with getting primary care physicians to locate here but struggles to keep them once they arrive.

A Primary Care Physician Shortage and the Impact on Quality of Care

The national news has certainly covered the lack of primary care physicians and how this issue is only going to deepen given fewer medical students choosing primary care as a profession. But I would have thought a city in the Pacific Northwest with a high quality of living, that such a place would be desirable for new physicians to locate, and particularly new physicians with families.

The whole process of finding a primary care doctor has been a bit of a culture shock for both of us. I’ve had to wait for physician appointments before but I’ve never had ACCESS to a physician controlled by a physician group. And as my husband said to me recently, he has no CONTROL over his own healthcare. He is beholden to whatever may be the strengths or weaknesses of the provider selected for him.

This does not feel like patient-centered healthcare. And as senior citizens, we feel particularly vulnerable. This is a time in our lives when continuity seems vitally important, when relationships with providers that we know and trust is preferred, and good communication is essential.

What are Your Experiences?

So, I am curious about your relationships with medical care professionals. More specifically, have you experienced any issues due to the national shortage of primary care physicians?

When Friends Get Sick – Here’s How to Help

Posted on July 22, 2020 by - Advocacy, Support

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.

Jaime

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.

What Are Hospitalists and Why Should You Care?

Posted on July 17, 2018 by - Healthcare

What Are Hospitalists and Why Should You Care?

Jim first encountered hospitalists during his stay for necrotizing (flesh-eating) pneumonia. Over the years, Jim’s experiences with hospitals have been many including cardiac by-pass surgery and a hip replacement. Both Jim and his wife Gwen, however, describe their recent experience with hospitalists as unsettling. When Jim was admitted into the hospital, his primary care physician could not help manage his care. The hospital had their own doctors.

What are Hospitalists?

Hospitalists, as defined by the Society of Hospital Medicine are: “Physicians whose primary professional focus is the general medical care of hospitalized patients.”¹ The presence of hospitalists in U.S. hospitals has increased dramatically in a relatively short time frame. In 2014, the Society of Hospital Medicine estimated more than 44,000 hospitalists worked in U.S. hospitals, a significant increase from the estimate of 14,000 only ten years earlier.² Reasoning behind the implementation of hospitalists:
  • Physicians dedicated to hospitals will know hospital procedures. Such familiarity suggests greater efficiency and effectiveness when ordering tests, prescribing meds, and handling paperwork.
  • Hospitalists know the clinical staff. Knowing clinical staff should facilitate coordination of different specialists, or forming a care team, depending on patients’ needs.
  • A hospitalist provides a single point of contact (SPOC) for patients, families, and caretakers. A SPOC should improve communication and understanding of tests and procedures.
Bottom line, hospitals are embracing this role with the intent to improve both efficiencies and the quality of care within the hospital.

Jim's Experience

As a patient however, Jim is now dealing with a physician that doesn’t know him. A physician who doesn’t have experience with his medical history. Quite simply, the hospitalist doesn’t know what normal looks like. As Gwen put it, “the hospitalist doesn’t know that Jim’s face is very red all the time and that his face should be all red, maybe. And that when he came, if he was green, maybe your own doctor would know ‘Oh, he’s always green, he’s always blue.’”

Primary care physicians have both history with a patient and they know what is normal. Jim and Gwen experienced a lack of continuity in the delivery of care, during a dramatic health scare, a time when continuity matters.

So What are the Statistics on Hospitalists?

Recent studies have examined the role of hospitalists in both patient outcomes as well as in the transition of care when patients are discharged.

  • In a study published in December 2017, the Journal of the American Medical Association concludes that “patients cared for during a hospitalization by their own primary care physicians had slightly longer lengths of stay, were more likely to be discharged to home, and were less likely to die within 30 days compared with those cared for by hospitalists.”³ These findings would suggest that familiarity does have an important role in patient outcomes.
  • Another study, funded by Patient-Centered Outcomes Research Institute (PCORI) and published in the Annals of Family Medicine, examined care transitions from the perspective of patients and caregivers. The lead author on the study, Suzanne Mitchell, commenting on the findings during an interview with AAFP News said, “The real punchline is that despite millions, if not billions, of dollars of investment to improve care transitions in hospital discharges, from the patient and caregivers’ perspective, everything still looks the same.”⁴

Taking Charge of Your Hospital Experience

Hospital stays are often stressful; there is a lot happening that can be new and confusing. And the trend toward hospitalists is still on the upswing. As frustrating as it may feel, it is necessary for both patients and caretakers to take a more proactive approach regarding their care during a hospital stay and during discharge.

During the Hospital Stay

  • Share all of your prescription medications as well as over the counter supplements with hospital personnel. Ensure that this information becomes part of your medical record in the hospital. Consider creating a list now. Keep it updated periodically and have it handy when needed. Such a list is important not just for a hospital stay but also for physician appointments outside of the hospital.
  • Clarify whether or not the hospital utilizes hospitalists. If so, make sure to get to know this person. During a hospital stay, many hospital personnel rotate in and out of the hospital room. If a hospitalist should introduce him/herself, the introduction may get lost, or a term other than hospitalist is used. Make sure to know who the hospitalist is and ask this person to clarify his/her role, and share what to expect, going forward.
  • Hospitalists work odd shifts – sometimes 7 days on and 7 days off. Find out the schedule so that you can be prepared if there is a change. Ask for a clarification of the hand-off procedure between hospitalists (does it happen in-person, through notes in the medical chart, e-mails, etc…)
  • Confirm the hospitalist has been in touch with your primary care physician (if you have one) regarding your hospitalization and your diagnosis.
  • Verify that other clinical personnel and specialists in the hospital are aware of the treatment plan and directions from the hospitalist. Ensure that everyone has the same understanding regarding medications and next steps.

Before/During Discharge

  • Determine whether or not your hospitalist has consulted at any point with your primary care physician during your hospital stay. If so, identify what was communicated.
  • Ensure there is a discharge plan for your release from the hospital. Make sure this plan is reviewed with you before you leave. Take the time to understand the discharge plan and ask any questions you may have regarding the plan. If there are concerns about safety, or what to expect when you get home, be sure to share these as well.
  • Review the medications that are prescribed for you as part of your discharge. If there is a change in the list from when you went into the hospital, make sure you know the reasons for the change.
  • Check to see if you have been provided with a number to call should you have any questions or concerns after you are discharged. If a number was not provided, ask for a number. Also ask for a number that is good 7 days a week, 24 hours a day, if you should need emergency assistance.
  • Determine whether or not your primary care physician will be notified of your discharge. Ask when the primary care physician will receive the discharge summary from the hospital (typically it should arrive within two weeks, if not sooner.) Information to be included in a discharge summary: diagnoses, abnormal physical findings, important test results, discharge medications, follow-up arrangements made and appointments that still need to be made, counseling provided to the patient and family, and tests still pending at discharge. Request a copy of the discharge summary be sent to you as well.
    ⁵

Why Does It Matter?

These are just a few steps to take during a hospital stay to ensure safety and optimize care. Again, the hospitalist does not know what normal looks like. It’s important to share, if like Jim, your face is normally red. Or perhaps for you, normal is green or maybe even blue. For more information on improving communication between physicians and patients, check out this post on what happens when doctors listen.

Despite over-medication and other communication issues, Jim survived his bout with necrotizing pneumonia. He attributes his good fortune to very proactive family members who monitored his care and treatment. If you, or someone you love, requires hospital care, remain vigilant and use the practical steps outlined above as a guide to better manage care and treatment.

* 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.


1 Pantilat, S., (2006). What is a Hospitalist? The Hospitalist. https://www.the-hospitalist.org/hospitalist/article/123072/what-hospitalist.

2 Siamak, N., (2017). What Is a Hospitalist? MedicineNet.com. http://www.medicinenet.com/script/main/art.asp?articlekey=93946

3 Stevens, J. P., Nyweide, D. J., Maresh, S., et al. (2017) Comparisons of Hospital Resource Use and Outcome Among Hospitalists, Primary Care Physicians, and Other Generalists. JAMA Intern Med, 177(12): 1781-1787. doi.10.1001/jamainternmed.2017.5824

4 Porter, S. (2018) Patients, Family Caregivers Talk Tough on Care Transition. Annals of Family Medicine Research. https://www.aafp.org/news/practice-professional-issues/20180628annalstransitions.html

5 Kripalani, S., Jackson, A. T., Schnipper, J. L., Coleman, E. A. (2007) Promoting Effective Transitions of Care at Hospital Discharge: A Review of Key Issues for Hospitalists. Society of Hospital Medicine. 2(5). doi.10.1002/jhm228

Asking For and Accepting Help During a Serious Illness

Posted on June 16, 2017 by - Advocacy, Support

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.

Brea

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.

Nora

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.

Lena

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

Posted on May 8, 2017 by - Advocacy, Support

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.

Jackie

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.