Recently, a close friend died after a complex hospital stay after a fall where she broke her hip. The story is complicated and I don’t have all of the details, but the experience raises several questions that point to challenges people face when thrust into the complex world of healthcare. The situation shows something I say often these days: ‘the healthcare system is set-up for the healthcare system and not for the people who use it’. This story raises questions about care coordination, how patient’s requests are handled and what happens when problems occur and the patient dies. The story will reinforce the reality that every patient needs an advocate when they are thrust into the complex world of healthcare.
Let’s look at each issue independently:
Care Coordination: My friend was an active, alert and smart 85-year-old women. She was a mother, a grandmother, and great-grandmother. She has a history of heart disease, high blood pressure and some other medical conditions that she managed with her trusted family doctor. Although she had moved to New Jersey, she continued to see her family doctor and the specialists that she was referred to when needed in the suburbs of Philadelphia. She had developed a good relationship with her healthcare team and was doing well.
The story begins when she fell while visiting her granddaughter. As she could not get up, 911 was called and she was taken to a local hospital but not the one where her family doctor had privileges. She had asked the Emergency Management Team who responded to the emergency to take her to the hospital where her doctors were. They said they had to take her to the closest hospital. So she was admitted to Hospital A, despite wanting to go to Hospital B which was 3.4 miles from Hospital A.
For some reason, the operation she needed was postponed for three days. My friend and her family asked the staff over and over, could she get her medications? She had been taking several medications that she was told by her doctors were critical for her plan of care. For some reason that I do not understand, the requests were not honored and she went without her usual meds for several days. She finally went to surgery to repair her fractured hip. She came through the procedure well. A day later, she took a turn for the worse and was transferred to the ICU. The family was told she had a heart attack. She did not respond to treatment and continued to go downhill till she expired.
Today the importance of care coordination is known to be a key factor in improving outcomes and containing healthcare costs. In the case of my friend – despite requests from her and her family to communicate with her primary care doctor and her cardiologist, Hospital A decided to go it alone. Why? I don’t know. I do know that my friend and her family were scared and frustrated as they were in an environment that was unfamiliar to them. Was the turn of events connected to the lack of care coordination? I don’t know. What I do know is that my friend is gone and her family is living with the feelings that they failed their mother. They wonder if the team at Hospital A would have taken the steps needed to learn about their mother’s history maybe things might have turned out differently and their mother might still be alive.
How a Patient’s Request is Handled: I was not presented during all the conversations that took place at the hospital over many days so I don’t know firsthand why my friends’ request was not honored. Today, the healthcare industry is encouraging patients and their families to ask questions and to be actively involved in their care, yet the lack of meaningful communication between the medical team, the patient, and the family continues to show that we have a long way to go if we are going to put these words into action.
If my friend’s request to be transferred could not be met, then why didn’t the doctor treating her at Hospital A take the time to meet/talk with my friend and her family to explain why? Why didn’t the physicians treating her put a call into the patient’s primary care physician and the cardiologist whom my friend trusted to learn more about her history and discuss the plan of care? I think these simple acts would have demonstrated that the healthcare team respected the patient and viewed care coordination as an important aspect of the care they were delivering. Also, keeping my friend and her family involved in the process would have given them some sense of confidence in the team caring for her.
What Happens When Problems Occur and the Patient Dies: Unfortunately we still don’t realize the things patients and their families really want when they enter the healthcare system. In my opinion, most people want to be able to talk to their team, share their fears, their wishes and their questions. They want to be kept informed and if something goes wrong, they want their doctor to tell them what happened, what they are doing to correct the problem and that the situation will be reviewed to ensure the event does not happen again. I really believe it is that simple.
The general public takes for granted that WE (the healthcare team) take the steps to know about their history, their current plan of care and talk to the doctors who have been treating them prior to the recent event (especially when they are not involved as in the case) The general public believes healthcare providers have a system in place to know their histories, their plan of care they are following and that steps are in place to address challenges that occur with providers who have the expertise needed. But the system does not always work the way it should. This is why having an advocate who is in place for the patient – to ensure their needs are met is needed.
In my friend’s case, the system failed her. Not because she died, but because those caring for her did not take the steps to coordinate her care and explain why they were doing the things they did. If they had, I believed they would have eased her mind. Instead, she died with fear and uncertainty – and her family is left with guilt, unanswered questions, and doubts.
I truly believe that if there had been a patient/hospital advocate in place to listen to my friend and her family they could have helped the treatment team understand the patient and family concerns, and taken steps to improve communication that would have helped address the issues.
Thank you for reading this post. If you have had a similar experience share your thoughts in the comment section.
The story you shared is sad; what is sadder is that this type of a situation happens daily. The system is often not set up for the convenience or the preferences and wishes of the patient. Most patients and caregivers do not know how to navigate the system and are not aware that they can say “no.” All healthcare professionals have the obligation to educate and empower patients/caregivers on how to navigate and advacate.
Patients and their families not only need an advocate, they need an advocate that is savvy enough to know how to extricate their clients from possible harm. This story raises a lot of questions that are unanswered:
1. Why did the patient fall in the first place? Her cardiac history would demand that the Attending at hospital A assure she was medically cleared for surgery. Clearing her should have triggered a request for records from her own doctor/hospital.
2. Did the family call her own doctor and ask that he or his office arrange a transfer to hospital B? Tertiary care hospital will send their own ambulance to come a get the patient when requested.
3. Who signed the consent for surgery if the wishes/rights of the family were disregarded? Was the patient fully capable of understanding the surgical risks?
4. What was the nature of the event that made her “take a turn”? It appears that she had an intra-operative cardiac event, but that should have been anticipated by the team, and explained as a risk for anesthesia and surgery. Did the family request a post-mortum? Only then will you be able to determine if the standard of care was breached in this case.
Modern Medicine is too complex for patients and their families to acquiesce their medical decision-making rights to whatever the health provider wants to do. The doctor is responsible to his employer, not the patient (and many doctors are now working for the hospitals). The danger for patients is that the provider is incented to offer treatment strategies that work best for them, not for the patient. In this scenario, the doctor is NOT obligated to tell you what is best for you. The doctor/hospital has one main customer: whoever is paying the bill. This is why the patient/family needs a strong and knowledgeable advocate to assure they survive a close encounter with the medical system.
This is a powerful post and rationale for patient advocates. Stephanie Frederick and I are currently collaborating on a Medical Improv workshop for PAs and I wonder how we might use it as part of a case study. Any objections?
Beth, yes, please feel free to use the story as a case study. Glad to spread the word to improve the process. Have fun teaching the Medical Improv course!
Mike, thank you for your comment. It was a complicated case that could have been handled differently with a better outcome. Sadly, we have a long way to go in understanding the simple needs of the patient and their families.
Hospitalists are “specialists” practicing in facilities across the U.S. I’ve seen excellent practitioners, but this trend has affected the continuity of patient care. The doc you see today is not who you’ll necessarily see tomorrow, and they’re not your PCP. So, #1, any person entering a hospital for treatment should have someone with them 24/7 to be their eyes, ears, voice… family member, friend, paid advocate. A “bulldog” who’s not afraid to challenge the system, and be kind while doing it. I agree with Michael that there are so many issues regarding a person’s health and safety to be addressed BEFORE a hospital admission. My experience with being called to advocate for an elderly patient AFTER a fall has almost always pointed to adverse medication interactions.
Thanks, Stefanie for your comment. I agree 100%. Our role as healthcare leaders is to educate the public and members of the healthcare team that we all need to work together to address the challenges we face. As is said often, we are or will be a patient at some point!
Hi Anne, I am very sorry about your friend’s loss and the way she was mistreated.
I recently had an experience with my own mother who fell due to dehydration, UTI and hypotensive episode which landed her in the hospital. She did not require surgery, but the hospital stay was problematic and i had to shake the system a few times.
Based on my miltiple experiences with inpatient/outpatient care through my various family members, some of them are alive today because of my knowledge of how to navigate through the system and not being afraid of making healthcare professionals upset.
Your friend’s experience absolutely should not be the case. But it happens all the time. However, there are no simple solutions because the reasons for poor care coordination are complex and numerous.
I think a care coordinator /advocate is a great idea but this may have to be an outside, privately provided service, where the advocate is independent from the facility and is not worried about job security at the facility.
Dina, thanks for your comment. Yes, it is a difficult time in healthcare and the public has to be educated and empowered. I try to do this with my Blog and through other mediums as I feel it is important as a nurse and a patient. The key lesson I came away with when I was a patient is that it is really hard to be a patient.