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Navigating Tough Transitions with Personalized Care

Posted by Dreu Adams on Sep 2, 2014 7:30:00 AM

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 Providing patient-driven care means that our clinical team works with your doctor to provide a plan of care unique to you. 

Having a clinical team on your side that truly listens to your goals and wishes and works to accommodate you can make a huge difference in the type and quality of care you receive.

In the following story, Jennifer - a Residential RN, helped a patient and his family navigate a very difficult time. Jennifer provided continuous education for the patient, but she also listened and advocated for him. Ultimately, the patient directed his own journey while Jennifer provided the medical and emotional support necessary to address his wishes.

Read on to learn how Jennifer and the Residential team worked to deliver care while successfully accommodating the patient’s personal goals and individual journey.

Patient Condition When Admitted

Patient was diagnosed with end stage leukemia. Weekly blood draws were taken for pending blood transfusion.

Highlights of Care Plan

Weekly blood draws for pending blood transfusion, hospice consult, comfort measures and relief of anxiety.

Jennifer’s Story

As a nurse it is difficult to recommend hospice to patients. I have always expected to "make people better."  When I first started seeing my patient he was a vibrant, healthy looking man that was told he only had 5 weeks to live due to end stage leukemia (that was 3 weeks before I started seeing him). The patient had to have weekly blood draws and, according to results, weekly blood transfusions. The patient’s physicians had recommended hospice to the patient. The patient and his family were in denial regarding his diagnosis/prognosis.

I knew that there was very little I could do to physically improve the patient’s health. The goals the patient had were to alleviate the extreme pain he had in his feet and to decrease the edema in the feet. Multiple conversations with the patient’s physician were made and over time and with medication changes, the patient was finally pain free. We also worked on elevating and wrapping feet to decrease edema. With time this too subsided.  Over the next few visits I developed a significant relationship with the patient and his family. After the rapport had been established I brought up hospice.

I spent a significant amount of time explaining the patient’s diagnosis to him and his family, and educated them on what they should expect as time went by. I remember at one visit the patient’s wife walked out of the room for a short period of time and the patient took my hand and said, "Jennifer, I am scared to death to die." It was at that moment that I realized my plan of care had to change. Instead of focusing on educating the patient on a cardiac/diabetic diet etc., I had to focus on the patient’s mental state. I began by asking him to share his feelings regarding death with me, and he did. We had a very intimate conversation regarding his fears, expectations, knowledge deficits, goals, etc.

What I did during that visit was LISTEN to him. I didn’t need to offer any advice or educate during that conversation because it was a chance for him to address his feelings without any bias.

At the end of the visit, the difference in the patient was remarkable. It was as if he had a load taken off his chest.

Over the next few weeks the patient started to become weak, ashen, lethargic, and he began to lose weight. The patient was taken to the hospital with a panic attack. When the patient came home I recommended an anti-anxiety medication to his doctor. The doctor agreed that patient needed something and prescribed him Xanax, which helped with his increasing anxiety related to death and dying. It was explained to the patient and family that if there were ever a time when he wanted to go to the emergency room to call me first. There were multiple times the patient or his family called me, day or night, and I was able to calm the patient and prevent a hospital visit.

During one visit, the patient’s son took me aside and said, "You may not think you are doing much for my dad but when you are here and after you leave, he has such a sense of calmness. He can sleep, eat, live." I hadn’t realized that I had made that impact on the patient. Eventually the patient had agreed to talk to a representative from hospice. Michelle joined the visit and explained hospice and the services they offer. The patient was very impressed and agreed to sign up for hospice. Hospice representatives went to the patient’s home and the patient had changed his mind. He wasn’t ready. He wanted to continue getting weekly blood transfusions because they made him feel better. During every subsequent visit, hospice was brought up but never pushed on patient. The patient was always reminded of benefits.

The patient became increasingly weaker, weight started to decrease rapidly, appetite no longer existed. Patient was admitted to hospital for severe anemia. After a few days the patient’s wife called and said he was ready for hospice. Hospice was notified and met with the patient in the hospital. The patient signed up for hospice and sadly within a week of being home the patient died, at his home where he wanted to be, pain free, surrounded by family.

I learned many things during this experience. First and foremost, we need to listen to our patients, their needs, fears, goals. If we truly listen to them they will learn to trust.

When they trust us they accept our recommendations. Secondly the team work from both areas of Residential was exceptional (home care and hospice). Multiple conversations with Michelle were made and she guided me through this experience. She is such an amazing resource. Last but not least, we have to advocate for our patients. Even though the patient was fearful of death and wasn’t ready for hospice, the continuous education and knowledge given to the patient ultimately helped him change his mind. His life ended the way he wanted it to.

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Topics: Home Health Care, Hospice, Real World Stories, Cancer, Bereavement