I’d like to tell a story about a patient who is so enthusiastic about sharing her satisfaction with care that she asked me to include her full name and phone number with anything I publish about her! After reminding her that like it or not I must respect her privacy, I committed to sticking with just her nickname.
Gina is in her 60s and has had a lifelong severe anxiety disorder that she has at least in part managed by smoking cigarettes since before she was 10 years old. As a result, she has COPD (chronic obstructive pulmonary disease) and depends on supplemental oxygen through a cannula: tubing to her nose that she can take on and off – and she is still plagued with the difficulty of smoking cessation. Earlier this year, she suffered the loss of her sister in California and couldn’t be present either for support during the last days or even for the memorial services due to the limitations of her ailments. Now, Gina has been essentially housebound for the past few months, fighting off her grief and struggling through bouts of difficult breathing – often facing the challenge of understanding whether her shortness of breath is from COPD, anxiety, or perhaps something worse.
I began seeing Gina exclusively through house calls since opening my practice for home visits in August 2017. Upon arriving to her home, I was almost shocked at the cleanliness of her apartment. Other than a single ashtray outdoors on her front porch, the home was in pristine shape, neat, organized and homey. A curio greeted me as I entered, covered with framed photographs of smiling faces probably from the 1980s-90s. A small galley kitchen with only a few dishes in the sink sported wiped-down counters and floral-décor salt-and-pepper shakers. The dining/living room housed dust-free classic wooden upholstered furniture. Not a whiff of cigarette odor could be detected indoors.
During my handful of visits to Gina’s home since August, we’ve talked about everything from her various attempts at using steroid inhalers, to her terror of leaving the house to see a psychiatrist, to me demonstrating stretches she can do in her own bed for her low back spasms, (which I suspect is related to the advanced anxiety). Honestly, that probably encompasses the topics touched on in a single visit. Overall, we have covered so much more.
Today was the second time I came to her home on an urgent to semi-urgent basis because she was experiencing respiratory discomfort. The first time this happened, I was already scheduled to see her at 3:00 in the afternoon that particular day. I happened to be on my computer at 9am when she sent me an email reporting she felt rather severely short of breath. I called her immediately. Her voice sounded weak. She could only speak about half a sentence at a time before needing to pause and catch her breath, but she was alert and able to explain the last time she took a nebulizer treatment which had been hours ago. After advising her that email is not the preferred method for reporting acute issues, I guided her to don her oxygen cannula and take another nebulizer treatment right away, then pulled things together to mosey over to her home. I prepared myself to consider calling 911 upon arrival. Instead, by the time I got there, she was tired but sitting up in the dining room and breathing smoothly. Her oxygen saturation was within normal range, her heart rate and blood pressure were stable. Since she was intermittently coughing up some yellow gunk, I added an antibiotic, adjusted her prednisone regimen, and left her to safely recover in her own home. That was about a month ago. She since stabilized, completed the antibiotics and began tapering down the prednisone.
Last night, Gina texted me that she was feeling poorly. She usually emails me multiple times a week with various questions or concerns, and chooses email specifically to avoid disrupting me when she sends these messages in the middle of the night. Since the text was a break from the norm, I responded promptly and after a brief text conversation made the decision to see her first thing in the morning. It sounded like a virus, but in patients with severe COPD that requires oxygen at home, simple infections can lead to poor outcomes much more easily than in a healthy person.
This morning I found her on the phone, sitting up in her bed with her laptop open in front of her. She was clearly uncomfortable and anxious, but a quick review of her vital signs and exam revealed that everything was stable after all, including a normal oxygen level and good, clear breath sounds through both of her lungs. More detail of her current symptoms clarified that her situation was consistent with a simple case of the sniffles – one that wouldn’t require an antibiotic this time around. Further conversation made it clear that she is severely depressed from the isolation of being homebound, although the idea of going beyond her front porch nearly sends her into full-blown panic – a common manifestation of her type of anxiety, known as agoraphobia.
It fascinated me, though, that despite the terror that lives in her eyes nearly constantly, and the tight, high-pitched tone her voice takes when she is describing any element of her illness, as soon as she focuses on something or someone other than herself – such as when she asks about me or my family – she relaxes and speaks in a normal, calm tone and timbre, and laughs amicably and easily. She is truly a warm, caring person. But left all to herself with nothing else to ponder, she becomes crippled with fear of impending doom.
I couldn’t help but think of the one other patient I currently see exclusively via home visits, whom I will call Minda. She has a case of fibromyalgia that has defeated numerous diet regimes, physical therapy and massage programs, a full battalion of the latest and greatest medication regimens directed at this diagnosis, and every manner of vitamin and supplement she could find and access. She daily expresses a desire to be free of pain and return to the workforce. Every time I visit her she has a new stack of library books about learning to manage chronic pain through natural means. Minda has impressively coped most powerfully with her limitations by starting and running her own online support group for fellow sufferers of the condition. Through her tremendous self-directed efforts and little bits of help I could provide along the way such as seeking insurance approval for a motorized wheelchair, Minda maintains a positive outlook and has managed to venture out of her home more than once in the past couple of weeks.
Glancing at the laptop before Gina, I asked if I might do a quick search on it. She agreed without a thought. A quick search led to an online COPD support group. There were more than a few posts from other sufferers expressing their own sense of fear and loss. Gina lit up immediately: “Oh, I have so many stories that could offer them hope!” She is a devout Catholic; Holy Water within a sealed vial is always in her hand or at her side. We bookmarked the web page and placed the icon on her desktop where she could find it immediately. When I departed, she was brimming with gratitude and hope.
I do not in any way claim to be nor even believe myself to be ‘better’ than other primary care doctors in the area. I believe with all my heart that the vast majority of PCPs out there want to take care of their patients like this, but believe they can’t because they don’t have the time. The true problem is that by depending on insurance plans for payment, these doctors have surrendered control over their time. In Direct Primary Care, I am no longer in any way employed by insurance plans. I am employed exclusively by my patients. Therefore, how my time is spent depends exclusively on the needs of my patients, rather than the cold metrics of insurance plans.
I am no better at my craft than the other doctors. I have simply made the decision to focus on my craft, and hope patients will perceive the quality of care that accompanies this level of time and effort is worth the modest price difference. I should tell you now that there will no longer be “outcome measures” determining the quality of my care, no statistics or percentage points marking “ease of scheduling appointments,” “wait times” or “success at blood pressure control.” There is only the experience of my patients. Since I am under oath to protect their privacy along with their health and well-being, I guess the only way for you to know is to see for yourself. 😊