By Lana Kirby, Denise B’s Aunt, with analysis and commentary by Terri Lewis, PhD, NCC.
July 24, 2017. My niece, Denise B. age 42 and mother of two daughters, age 15 and 18, was stable despite major auto-immune disease processes which had already caused her to lose her right leg below the knee.
On this day, Denise went to visit her boyfriend. As she was leaving, she felt a terribly painful ripping sensation in her abdomen. 911 was called and Denise was taken by ambulance to St. Francis Hospital in Greenwood IN where she was examined in the emergency room.
At St. Francis old medical records documented that Denise had a history of substance abuse but that she had been completely “clean” for 3 years; abdominal internal bleeding had just started leading to bruising of her stomach and back. Her labs weren’t normal, but despite voicing her concern that something was terribly wrong, and expressing her fear of throwing a clot would go to her lung, she was discharged with diagnosis of a bruise and instructions for care.
Knowing she’d go home alone and in horrific pain, Denise was afraid and depressed. Asking to see a crisis counselor, Denise was instructed to go to Valle Vista Drug Rehab and Mental Health Center the following day or so.
July 25, 2017. The pain worsened, so Denise presented to Valle Vista. Upon arrival, a half hour wait in the waiting room led to a 4-hour “intake process where the intake coordinator was dismissive of Denise’s report of pain at “10” on a 10 scale – and increasing. Upon arrival to Valle Vista, Denise was screened for substance abuse and suicidal idea; which she denied, although her admitting records were coded as “Depression and Suicidal Ideation.” Urgent requests by Denise to call 911 were met with resistance, but a call was finally placed.
Denise arrived by ambulance at Community South (ER2) as an admit from the “psych” hospital. Her severe abdominal pain wasn’t taken seriously. The radiologist’s report read that she had about 20 cm of “thickening” (likely from the Lovenox blood thinner shots Denise had given herself every day) with a hematoma in the center measuring approximately 6.5 cm x 4.6 cm. While this may not have been enough blood to warrant transfusions at this point, reports of internal bleeding should warrant further investigation when the patient has an auto-immune disease process which requires heavy blood thinners on a regular basis.
Her complaints of pain were quieted by an injection of a chemical restraint drug, Haldol, normally used to treat acute psychosis. Despite the fact that a CT scan showed blood in her abdomen and abnormal labs, she was discharged from ER2 with a diagnosis of hematoma and stack of handouts that included instructions for the care of bruises:
When to go to the emergency room (ER)
Bruises almost always heal on their own without special treatment. But for some people, a bad bruise can be serious. Seek medical care if you:
- Have a clotting disorder such as hemophilia.
- Have cirrhosis or other serious liver disease.
- Take blood-thinning medications such as warfarin (Coumadin).
What to expect in the ER
A doctor will examine your bruise and ask about any health conditions you have. In some cases, you may have a test to check how well your blood clots. Other treatment will depend on your needs.
The next 1 1/2 days were miserable for Denise. The abdominal pain continued to worsen. Her abdomen was now very swollen and bruised. Desperate for help, Denise determined that she must get help somehow, from someone.
July 28, 2017. Desperate, Denise found the number of a hematologist buried in the discharge paperwork by ER2. She talked the hematologist into seeing her that same day. Immediately upon review of ER2’s records, the doctor noted that the “hematoma was 20 cm x 6.5 cm x 4.6 cm. He also noted that she was released despite high levels of hemoglobin shown in her labs and released on blood thinners, Lovanox injections, Plavix, and aspirin. He advised Denise that if she didn’t get transfusions started right away she would die.
She was taken by ambulance to Community South where she was immediately admitted with orders of transfusions, CT scan, and bloodwork. She was given 2 units of blood STAT. Assessment of her extremities located a blood clot that had formed in her leg. She was taken to surgery the second day after admission and the clot was removed, but it reformed the next day. Denise laid in a drug-induced coma, intubated, for a week while doctors and family patiently awaited internal bleeding to stabilize that they could amputate her remaining leg.
Denise has now lost both legs below the knee. Being a single amputee is much different than double. And with the week-long fiasco, Denise also suffered from PTSD from being treated first as an addict and having no one believe her.
My reflections on the role of a care partner-
If one person, just one, had put two and two together and came up with a four, Denise would still have her second leg. It was only after reviewing the entire body of medical records that we could grasp the totality of what we were not told and could see the developing sequence of errors. In Denise’s case, those four to five days chasing around from one ER to the next almost killed Denise, not to mention the costs incurred for her erroneous care. If I were an ER physician at St. Francis and any physician going forward, I would have to ask myself …
(1) This person has a bona fide blood clotting disorder;
(2) she now has bruising in her abdomen;
(3) the abdominal pain is a 10 on a 10 scale;
(4) If the abdomen is bleeding, yet she continues to take blood thinners, won’t she bleed even more in the abdomen?
I’m not a doctor, but these questions make sense to me. For the love of God, we’re not talking about losing a tooth, people. Directly as a result of being stigmatized in the emergency room, Denise LOST HER SECOND LEG!!
How and why did this happen? She did every single thing that she was told to do by medical personnel at no less than three respected medical care facilities and still wound up getting mistreated, disrespected, degraded, and lost her second limb. This is where the importance of having a caregiver at the side of the patient is of critical importance at this time with the current affairs of the medical community and insurance considerations as they are today.
Staff in two emergency rooms provided nearly non-existent care, completely ignoring the fifth vital sign, “pain.” Isn’t pain the body’s way of telling you something’s wrong? Why was Denise’s 10/10 pain IGNORED, IGNORED, IGNORED? This is what I’m trying to understand. Under these circumstances, Denise’s report of pain” was interpreted by emergency personnel and doctors in the emergency room, as “drug seeking,” and resulted her discharge without investigation. Throughout this process, she was profiled as a drug seeker everywhere she went and was passed off as “pain patient from a psyche hospital” at one of the most critical moments of her journey through care.
What is being done with all the money that has been ear marked for heroin addicts? Haven’t we gone out of our way to “remove the ‘stigma’” associated with being a heroin addict? Why are we doing everything in our power to help heroin addicts, but losing the fight? Why are good people sacrificing life and limb to …What? Prove a point? Educate someone, anyone!
I, for one, have “had it up to here” with this type of inhumane, disgusting lack of humanity, and deliberate teasing, mocking, and wrongful treatment of pain. Addiction leadership in this country has installed harmful rhetoric that is increasing serious adverse effects. The government’s so-called “war against heroin” has emergency personnel numb to the fact that the patients they’re dealing with could have a real problem unrelated to illicit drugs or an overdose. In this case, emergency personnel interpreted her presenting problems through the ‘heroin epidemic,’ overlooking obvious symptoms and red flags that a much more serious problem was going on.
It has come down to this. When as you enter the emergency room as a chronic pain patient, you’re alone – it’s a “you against them” mentality and you better not enter this alone because you have no protection from the effects of being stigmatized. I would welcome the opportunity to discuss this with PROP, CDC, FDA, the President’s OPIOID Commission, and members of Congress.
Analysis and Commentary
Terri Lewis, PhD, NCC.
Denise’s story is becoming less and less unique. To understand the degree to which Denise was injured as a direct result of her interaction with her health system, one has to examine the various points at which Denise’s care went awry, beginning with her first presentation to the emergency room of her local community hospital.
First, Denise’s history of substance abuse resulted in her being tagged as a drug seeker with mental health problems by ER personnel when she expressed that she was experiencing pain. This was reinforced by her characteristics – she has a history of substance abuse although she was clean, an obvious disability, she has health conditions that would ordinarily be under the care of pain management, she relies on public benefits, and upon her second presentation, she arrived from the local mental health center. The self-reported health complaint that brought her into the ER was dismissed in favor of the perception that she was there to obtain drugs for pain despite her documented complex health care history.
Second, emergency rooms have a responsibility to stabilize and return to community care as quickly as possible. But Denise lacked a primary care physician to return to – an increasing problem for persons with complex care needs. Having none, her request for crisis support resulted in a referral to a mental health and addiction provider, no substitute for primary care. When she presented as directed to the local mental health provider crisis intake, her self-reported acute levels of pain were characterized as drug seeking.
While screenings for suicidal ideation and substance abuse are required and important, personnel on the scene interpreted her reports of pain as ‘anxiety, preoccupation with her health conditions, rumination, and paranoia.’ This followed her into the emergency room and led to her care being delayed by more than 48 hours from the time she left the first ER to the time she was finally forwarded to the next hospitalization. All the while, blood clots were building in the remaining leg and the abdomen.
ER2 identified a hematologist in their discharge paperwork, but the appointment was not made by hospital personnel to follow up her ER visit with an appointment. Errors of discharge process allowed her medical crisis to worsen. Hospital social workers were not contacted for assistance.
Her medical records reflect a history of noncompliance with health care which actually reflects a lack of resources to comply with scheduled appointments. This is a prime example of the need for communities to design ‘every open door policies’ and train personnel about recognition and handoff of complex patients with multiple comorbidities. This also represents a health care system training gap.
Medicare has created a carve out for primary physicians to utilize case management and medical home procedures for complex cases in order to reduce re-hospitalizations and improve outcomes. But one must have access to a primary care physician in order to utilize these services. Persons who receive their healthcare through the emergency room are not represented by this resource. With increasing frequency, persons with chronic pain are being dismissed from primary care practices over fear of prescribing schedule II drugs and lack of Board Certification in pain management or anesthesia.
Third, Denise is dually eligible and has both Medicare and Medicaid, which should have provided a large clue to ER personnel that she had verified special health needs which had already been determined and which were reflected in her medical records. Her available medical records at Community Hospital reference multiple conditions that are not reflected in her amputation discharge planning at the rehabilitation hospital, any one of which requires consistent supportive monitoring – history of substance abuse; asthma, celiac disease, chronic pain, depression, IgA deficiency; occlusive thrombus; psoriatic arthritis; Raynaud disease; seizures.
Her insurer, Humana, is managing Denise’s insurance through a Special Needs plan (SNP). This is a type of Medicare Advantage plan that combines all the benefits of Original Medicare (Parts A and B) with prescription drug coverage (Part D), but it’s only available to beneficiaries who have a specific health condition, who are eligible for both Medicare and Medicaid, and/or are a resident of a long-term care facility. Care coordination is supposed to be a feature of this plan but there is no evidence that this has been accomplished in this case. Because this has not been accomplished, a primary care physician is not available to Denise, leaving nobody to order post-surgery follow-ups or ensure that she has access to medications, assistive technology, prosthetics, or nursing supports. Without these follow-ups, her recovery is compromised and she is vulnerable to relapsing illness and substance abuse. As importantly, consumers in Denise’s situation may not understand their rights and fear engaging with the system because they lack the language to ask the right questions.
Fourth, the influence of Denise’s blood clotting factors were known but their influence was detected very late in this intervention. They require monitoring and evaluation in order to head off future difficulties. Again, there is nobody to coordinate the necessary resources with a hematologist or other services.
Fifth, Denise’s report of pain as her primary complaint derailed her care from the beginning of her presentation to both emergency rooms – where she was met with a firm denial of drugs for pain. While she was denied attention for pain at intake, at discharge there is nothing in the records to suggest that perhaps attention should be given to coordination of her post-surgical pain management with relapse prevention for substance abuse or treatment for depression or the host of other challenges she is facing.
The Need for Treatment Planning and Follow-up
Denise’s discharge planning after amputation is devoid of recommendations for managing the multiple medications she is taking daily or pharmaceutical counseling. It appears that the focus on denying drugs for pain may have been given far more weight than addressing the risks of polypharmacy and drug-drug interactions or need for pharmaceutical review and counseling. Polypharmacy is a leading cause of medical harm and creates vulnerability to overdose, but in this case, drug-drug interactions went undetected. Additionally, drug interactions were not detected until her care partner became involved and reviewed medical records in total.
The emergency room is not a substitute for primary care. Denise is clearly a candidate for palliative care at this point and certainly was prior to this interaction based on her medical records. It is unlikely that emergency room personnel would consider this kind of facilitation to be within the scope of their duties. Given the nature of her comorbidities, she was a candidate for this type of care prior to her surgical amputation of the second leg. Had she had access to coordinated community-located care, it may have had an impact on management of her multiple comorbidities and might have led to earlier detection of her clotting disorder, preventing the loss of the second limb.
Indiana’s pain law offers this support once the determination is made that her complex needs will require ongoing coordination of multiple supports for the balance of her lifetime. Assisting Denise by coordinating her care needs will improve her health status, facilitate her independence, and reduce costs associated with coordination of long term care. She will be able to continue her role as a parent for her daughters.
But access to this tool remains unavailable to her because the link from hospital to community is severed by a flawed system design at the local level. Neither the insurer, nor the hospital, nor her specialty provider has closed the loop for Denise throughout this medical crisis. Her medical records make no mention of the need to comprehensively manage her multiple comorbidities. This role is left to caring family members – who are themselves frequently overlooked for the important function they serve in making sure that things work – often at great personal expense to themselves.
The additional harms imposed by these communication failures has cost Denise severely. It has also led to unnecessary cost to our health care system. How can we get this corrected to get Denise back on track? Here are potential remedies with links –
- Denise’s insurer needs to help her locate a primary care physician who can coordinate the necessary services, preferably one who is familiar with a palliative care approach and who is utilizing the medical home integrated model. https://www.nhpco.org/ and https://innovation.cms.gov/Medicare-Demonstrations/Medicare-Medical-Home-Demonstration.html
- There is a palliative care provider group about an hour’s drive south of her location. It appears they serve community-located consumers. http://iuhealth.org/palliative-care/
- A case manager needs to be appointed by her insurer to help coordinate her benefits.
- Because her car is not modified with hand controls, transportation to and from appointments should be authorized by Humana under her special needs plan.
- At the point that she has healed enough to regain her driving ability, she should be referred to the state vocational rehabilitation agency for assistance with driver’s training using hand controls, and her car should be modified for her use. http://web.inarf.org/events/Easter-Seals-Crossroads-INDATA-Project-Adaptive-Driving-Training-1185/details
- Referrals need to be made for specialty care – hematology, prosthetics, assistive technology, home modifications, mental health, physical rehabilitation, adjustment and family counseling.
- A referral to the hematology group at Cleveland Clinic is now underway. The goal is to get to the root cause of her factor clotting issues so that she can be properly medicated and monitored.
- Multiple surgeries will have to be coordinated to prepare her limbs for prosthetics. This will require coordination of planning and benefits and mindful assessment of her factor clotting issues.
- Her section 8 housing provider must follow through with adaptations that assure Denise can safely leave her apartment and that she is safe inside her apartment. https://portal.hud.gov/hudportal/HUD?src=/program_offices/fair_housing_equal_opp/disabilities/inhousing
- Denise needs pharmaceutical counseling and her medications need to be closely monitored with periodic follow-up so that she gets outcome she deserves.
- Denise needs a positive social network and social interaction within her community. A church, social club or community agency volunteer roles may help with recreating a positive community network.
- Each state has a center for independent living program (CIL) funded in part through the Rehabilitation Act. Denise will be eligible for all of the services they provide to ensure that community-located persons with disabilities are able to gain adequate benefit from the community services of their choice. https://www.in.gov/fssa/ddrs/2762.htm
Dr. Terri Lewis is a rehabilitation educator, clinician and researcher who specializes in chronic pain and is a frequent contributor to the National Pain Report. Dr. Lewis is writing a series of articles in September that address the big issues facing chronic pain and chronic illness patients. Her other installments can be found here.
Featured image: Denise B.