When Healthcare Communication Breaks Down: Who Is Looking Out for the Patient?

Several years ago, I was involved in the care of an elderly woman with dementia who resided in a long-term care facility and was receiving hospice services.

When she developed an infection, she was transferred to a hospital emergency department for evaluation.

Her brother was her designated healthcare surrogate, responsible for participating in medical decisions on her behalf.

When I learned of the transfer, I contacted him to find out what he knew about his sister's condition.

He had not been notified that she had been transferred to the emergency department.

He had no information about her condition, what prompted the transfer, or what was happening with her care.

His sister was in a hospital emergency department, unable to communicate her needs or participate meaningfully in medical decisions, and the person responsible for making those decisions had not been informed.

Unfortunately, situations like this illustrate how vulnerable patients can become when communication between healthcare providers, facilities, and families breaks down.

Recognizing the importance of keeping her healthcare surrogate informed, I contacted the emergency department and spoke with the nurse caring for her.

Her evaluation was still underway, and it had not yet been determined whether she would be admitted to the hospital or returned to the nursing facility.

I contacted her brother again, shared the information I had obtained, and assured him I would continue to follow up as additional information became available.

As her condition and treatment options became clearer, her brother faced a significant decision.

Should his sister be hospitalized for treatment of the infection, or should she continue receiving comfort-focused care?

There were important considerations associated with each option, including how hospitalization and treatment might affect her hospice services.

I helped him understand the information provided by the hospital, the available options, and the potential benefits and burdens of each approach.

Ultimately, he chose hospitalization for intravenous antibiotic treatment.

My responsibility was not to influence his decision. It was to ensure that he had the information necessary to make an informed choice consistent with his sister's known wishes and goals of care.

I also explained how the decision affected her hospice services and discussed care options that might be available following hospitalization, including palliative care or returning to hospice if appropriate.

Certain patient details have been limited to protect privacy.

Healthcare involves many professionals working in different settings, often under demanding circumstances.

A patient may receive care from a primary care provider, specialists, hospital staff, rehabilitation professionals, home health providers, and long-term care personnel.

Each may be focused on a particular aspect of the patient's care.

However, when patients transition between settings, important information can be delayed, misunderstood, or overlooked.

Families may assume that everyone involved has the same information and understands the patient's overall goals of care.

Unfortunately, that is not always the case.

Communication gaps may result in:

• Family members being unaware of changes in a loved one's condition.
• Confusion about diagnoses, medications, or treatment recommendations.
• Uncertainty about who is responsible for coordinating care.
• Important healthcare preferences not being communicated during transitions.
• Discharge plans that families do not fully understand or feel prepared to manage.

Here are five questions I encourage families to consider:

1. Who is responsible for coordinating my loved one's care?
Identify the primary treating provider and ask whom you should contact for updates or concerns.

2. What is the current diagnosis, and what is the treatment plan?
Ask for explanations in language you understand. If something is unclear, request clarification.

3. Have the healthcare team and appropriate decision-maker discussed the patient's wishes and goals of care?
This is particularly important when a patient has dementia, a serious illness, or an advance directive.

4. What decisions may need to be made, and what are the benefits and risks of each option?
Understanding the available choices allows patients and their authorized representatives
to participate more confidently in decisions.

5. What happens next?
Whether the plan involves continued hospitalization, rehabilitation, returning home, or transitioning to another level of care, ask what services, equipment, medications, and follow-up arrangements will be needed.

Families should never feel embarrassed to ask questions or request additional explanations.

One of the most important lessons I have learned during more than four decades of nursing is that patients and families often need more than medical information.

They need someone who will listen, help them understand what is happening, recognize when important questions remain unanswered, and support communication among everyone involved.

An independent patient advocate can provide an additional layer of guidance by helping individuals and families navigate complex healthcare situations.

This may include preparing for medical appointments, clarifying information, coordinating communication, identifying resources, and assisting with transitions between healthcare settings.

For individuals without nearby family support, this guidance can be particularly valuable.

An advocate does not replace the healthcare team or make decisions for the patient. Rather, an advocate helps ensure that the patient's needs, preferences, and concerns are understood and respected.

The experience with this patient and her brother was not simply about a missed telephone call.

It was about a vulnerable woman who could not speak for herself, a family member who needed information to fulfill his responsibilities, and a healthcare situation that required thoughtful communication and coordination.

It reinforced my belief that good healthcare involves more than treating an illness. It also requires protecting dignity, respecting personal choices, and ensuring that patients and families are meaningfully involved in decisions.

Whether someone is facing a new diagnosis, managing a chronic condition, experiencing a hospitalization, or transitioning to long-term care, their voice and wishes should never be lost in the process.

At Guided Path Healthcare Advocates, LLC, we believe that informed patients and supported families are better equipped to navigate healthcare challenges with confidence.

Because when healthcare becomes complicated, no one should have to navigate it alone.