Patients need help to navigate the maze of healthcare

Each time I enter the healthcare system from the other side (that is the side of the patient or family member) I am reminded how vulnerable patients and families are when there is no one advocating for them. I am reminded of how important good communication is between patients and care providers, and how critical the flow of information is for patients and families when they are facing serious challenges to their health and life. When patients get lost in the system without a guide it is a perilous and potentially deadly place to be. Over the last few weeks I have heard a number of stories from family and friends about a variety of personal encounters with the healthcare system and have been alarmed by the themes of “being in limbo”, “pushing for answers” and “going into battle” with the system to get appropriate, timely and effective care.

Why do patients need such protection from the system designed to help and heal them?

When the system becomes more complex and highly specialized, healthcare can become fragmented.  Patients are so often sent off on journeys to find answers to their health problems on their own. Patients have a somewhat naïve faith that all team members are talking to each other and working together to solve their health problem in an individual and personal way. Patients believe that someone is actually putting the pieces of information together for them and managing their journey from illness to health. When high quality healthcare is being delivered this is actually true and their faith is rewarded. Unfortunately, in many cases, it is the patient themselves or their family that is left with the responsibility to co-ordinate care, from scheduling diagnostic tests, arranging visits to specialists and even managing treatments. Without inside knowledge and strategic alliances, patients can get lost in the system, waiting days, weeks or even months for specialist appointments, testing appointments, test results, diagnoses and treatment plans. Sometimes such a significant amount of time is lost in this process that opportunities for recovery are missed. It is incredibly time consuming to engage with the healthcare system and patients can easily give up on seeking care or find they are not equipped to advocate effectively for themselves and powerlessly accept the long wait for advice or care.

My nursing colleagues often take on the role of informed advocate for their own friends and family in these situations and many have shared stories of correcting a misdiagnosis and standing their ground to get critical tests, information and answers when they have slipped into the void or seem stuck on the medical merry-go-round. In fact my own family has an open offer for me to appear at their bedside or doctor’s office at any time of day or night if they need someone to be their healthcare navigator in times of illness or injury. I help them find the right words, know the buttons to push, help gather the best evidence about the most effective treatment and even go into battle with them if they need a second opinion.

What if patients don’t have nurses in their personal network or informed advocates by their side?

Patients can engage a professional patient advocate whose role it is to give the patient a voice in their care. Professional patient advocates are available in many hospitals and have a strong commitment to patient safety and well-being. But what about nurses? Patient advocacy is supposed to be part of the nursing DNA. It is stated in our code of ethics1 and underpins our discipline. Sadly nurses sometimes miss opportunities to advocate for patients. Perhaps nurses become so accustomed to the healthcare environment that they do not see things through the eyes of patients and families and miss the cues that they need to advocate. Strategies are needed to support all members of the healthcare team to identify when patients are floundering, in order to create a truly patient centered and coordinated approach to care.

A recent article by Pamela Greenhouse entitled “Shaping the next generation of health providers” outlines the challenges in changing the culture of healthcare to be truly patient centered. She speaks of the importance of providers being able to see the healthcare experience through the eyes of patients and families. Greenhouse explains how students in nursing, medicine and health policy can be used as “shadowers” of healthcare.  Greenhouse believes that having students shadow the care experience in every segment of the journey sets them up to see healthcare through the eyes of patients and families as well as providing the organization with vital information about the flow of care from the receiving end. One “shadower” reflects on this:

Shadowing has allowed us to view health care not from the typical care giver’s perspective as we are used to, but from the patient and family’s perspective. Being able to Shadow the caregiving experience from both the caregiver and the patient perspective is a unique dichotomy that we are privileged to have experienced. We Shadowed patients through a wide array of care experiences, including orthopedic surgery, internal medicine, transplant surgery, and obstetrics. Each care experience provided us with unique insights into not only these medical specialties but the processes by which care is delivered.” http://www.engagingpatients.org/through-the-eyes-of-patients/shaping-next-generation-healthcare-providers/

This is just one way of addressing the challenges of providing patient centered care. Another example can be found in the various “Mhealth” or mobile technology innovations and phone apps, which are also poised to put the patient in the center and better connect patients with providers as they navigate the system. It is the hope that these new tools will keep patients in the loop and enable more timely communication, more effective treatment plans and ultimately better health outcomes. However  it is early days and we are still gathering the evidence about the best ways to use health information technology to engage patients and build communication bridges for safe and effective care.

For many patients there is no real substitute for the personal approach and nurses are often best placed to connect with patients and support their journey from illness to wellness. So, be alert to patients who are lost or wandering in the system. You have the skills to recognize when help is needed and to guide patients back onto the path to better healthcare experiences.

Allison Shorten RN RM PhD

Yale School of Nursing

 

  1. International Council of Nurses (2012) The ICN Code of Ethics for Nurses http://www.icn.ch/images/stories/documents/about/icncode_english.pdf (accessed September 22nd 2014)
  2. Greenhouse P. (2014) Shaping the Next Generation of Healthcare Providers. http://www.engagingpatients.org/through-the-eyes-of-patients/shaping-next-generation-healthcare-providers/ (accessed September 22nd 2014)

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