Wednesday, May 21, 2014

The Courage to Seek Care

One of the things that my students and I have observed time after time in working with patients is that many we are caring for in the hospital have delayed seeking care. Once they did seek care, many ended up getting bad news, such as a terminal diagnosis or finding that they have not only what they were admitted for, but other serious illnesses. 

Faced with these real-life cases of delay in seeking care, we began to wonder:  WHY? 
  • WHY did they wait so long? 
  • WHY didn't they get help in the early stages, before this got so bad?
                 and then 
  • WHAT could we have done to prevent this?
Many researchers, clinicians and scholars have described care-seeking theories and have researched care-seeking delay. A variety of theoretical models have attempted to explain care-seeking and to identify ways we can prevent delay. Many of these theories focus on health knowledge and access to care. However, in talking with my students, and reflecting on my own experiences lately, I've come to realize an important issue that most theories and providers may not adequately recognize:

It takes COURAGE to seek care.
  • A person who does not feel right may be afraid of the possible causes of their symptoms, fearing the worst. 
  • A person with chronic illness has usually been through the pain, anxiety and life-interruptions associated with emergency medical care, testing, procedures and hospitalizations. It's hard to make a call for help when you know what will happen next.
  • A family with a loved one who is getting more and more frail often knows the end is near. They just don't want it to be yet.
Yes, it often requires great COURAGE to seek care.

Courage is defined on Google as: 
the ability to do something that frightens one; strength in the face of pain or grief. 

I like this definition because it accurately reflects the challenges faced by patients and families in seeking care. It can be frightening to seek care for symptoms: not knowing what to expect, fearing the worst or knowing what's going to happen. It often takes strength to to seek care in the face of the physical and emotional pain and loss you know you and your loved ones will experience. Patients and families who seek care are courageous. 

The courage to seek care is rarely identified. Rather than recognizing and reflecting on how difficult it may have been for the patient and family to seek care when their health was changing, providers often reprimand them for not seeking care earlier. However, I believe this is a counter-productive and paternalistic approach. Is a patient who feels scolded by their provider likely to want to encounter that feeling again, especially after going through the many challenges of a symptom work-up, medical treatment or hospitalization? Is someone who is vulnerable, going to be helped by this approach?

Instead, I propose that we support and encourage patients and families during the process of seeking care; that we acknowledge the difficulty of making the decision to get help. That we do all we can to make the healthcare experience easier so that when they come to us for help, they find support and relief rather than pain, suffering and fear. I believe this type of response will help strengthen patients and families, helping them find the courage they need to seek care again in the future. 

Monday, May 19, 2014

An Overview of Palliative Care from a Nursing Student Perspective

This essay was written by my junior BSN nursing student, Bethany Rieth as an assignment in her Clinical II course in the University of Wisconsin-Madison School of Nursing. I wanted to share this as it provides a succinct, accurate overview of palliative care from the perspective of a student who is just learning about it- a perspective I feel is relevant to anyone who is learning about palliative care for the first time. I am publishing this here with her permission. 

I have had no experience with someone who has been in or wished to transfer to a palliative care unit. Therefore, I wanted to gain some insight about what it is and how it affects those who may be associated with the unit. I was hoping to become a bit more familiar with it, so I can answer basic questions that may arise and to have a better understanding of end-of-life (or those becoming closer to this stage) type situations.

First, I wondered exactly what palliative care was. Palliative care is specialized medical care focused on identifying and relieving the pain and other symptoms of a serious illness. Its goal is to improve quality of life for such patients at any stage of illness regardless of current treatment plans, and it is tailored to the needs of the patient and the family.

After researching, I was surprised to see that more often than not, people refuse palliative care simply because of the idea associated with death and “giving up on life.” Patients assume that this is only for people who are near death and have no other options to survive. However, palliative care can be utilized for anyone facing serious illness and it can be used during any stage. Palliative care can be used to manage symptoms and assist in education of the patient throughout the changes in the patient’s health. They can find day-to-day treatments and guidance from clinicians and physicians, rather than waiting for an upcoming appointment or emergency room visit. It provides a great atmosphere for support, planned care and may ease the stress on the patient or the patient’s families. 

The continuity of care is essential in palliative care, and it has proven good results. It often extends the life of the patient, approximately 2 to 3 months longer than a patient who seeks standardized care.
By seeking palliative care within the early stages of illness, it can provide more optimal clinical outcomes. This can include better quality of life, mood, less aggression, and support throughout the stages of illness. They can focus on symptom management and prognostic awareness, which is critical for terminal illnesses and all chronic diseases. 

The teams within a palliative care unit are often trained to provide excellent pain management interventions and know the signs/symptoms associated with chronic and severe illnesses. They are great at supporting the patient and the patient’s families through the emotional impact of serious illness and may help lower stress levels throughout the process. They can guide family decisions, provide information and education, and show support throughout each step. Especially for dying patients, preparatory grief has shown importance for both the patient and family. While this is challenging for everyone involved, it is useful to be prepared and transition through the mourning process.

There can be a stigma associated with palliative care, the idea that transitioning there signals a beginning of the end, which may take away patient hope. This is often why the patient or family will resist palliative care and the treatments offered there. It is important to inform them that most of the therapies offered with help patients make better decisions about the types of health care they wish to receive. It is important to distinguish these aspects with the patient, allowing them to make an informed decision about their illness or end-of-life plans.


Strand, J., Kamdar, M., & Carey, E. (2013). Top 10 things palliative care clinicians wished everyone knew about palliative care. Mayo Clinic Proceedings88(8), 859-865. doi:10.1016/j.mayocp.2013.05.020