Hospice also has a role in serving the community through educational speeches and work shops. Our liaison educates staff in Nursing Homes, Assisted Living Facilities, Doctors offices, and hospitals about the services Hospice provides.
Hospice is acutely aware of the ethnic diversity in our community. We are educated in the different cultures and customs. Hospice empowers the patient and families to have some semblance of control over death and dying.
A hospice team involved in the care of a patient and family normally consists of an RN Case Manager who coordinates the care of the patient, assesses and makes changes where needed, Hospice Aide who provides personal care needs and comfort to the pt, Social Worker who works with the pt and family in resources that can better assist them, Hospice Chaplain to provide much needed Spiritual Support and Volunteer services (if requested), who provide respite for family members and company for the patients.
Most people these days prefer to die at home and out of the clinical setting of a hospital. They choose to be in their familiar surroundings, having the support of family around them, their pets and familiar smells. They inform us of their goals for care, of their wishes in how they choose to have us care for them.
We once cared for a mechanic and his goal was to come home from hospital and die in his garage/ workshop that he had managed for many years. We turned the third bay of his work shop into his bedroom with hospital bed and other equipment required for his care and comfort. His wish was to die surrounded by those smells he loved. He was able to fulfill his wish with hospice and his family by his side.
Our primary goal as a Hospice Team is to honor patient's wishes and goals as they decline with their life limiting illnesses. Our aim is to educate and prepare ahead of time in the changes they may see or feel. Being educated certainly alleviates some of those fears and stresses families go through. We desire that the death of a patient be as spiritual, comfortable, peaceful, and dignified as possible.
I would like to share a personal experience with you about a patient I cared for. She was my patient for nearly a year. On entering her home for the very first time I met a very frail but fiercely independent woman living alone following the death of her husband many years before.
She was a very reserved lady who rarely showed any emotion.
Assessing her was difficult as she only responded in "yes or no" answers. It was obvious she was in pain as she would flinch or pull away during my assessment but when asked if her pain had increased she would always say 'it is about the same', she rarely spoke about the changes she had noticed or symptoms she was experiencing.
Initially I visited her once a week at her request. A good portion of my visits I would sit with her and educate gently on the importance of sharing with each other changes either one of us had noticed. Over a few weeks she felt more comfortable with me, we had built up a trust and she was able to share more about what was going on with her and her thoughts.
She stated she never wanted to talk about her pain or other troublesome symptoms because all it did was remind her of the life limiting illness she had. She felt like she was losing control of her independence that she had known for many years. We discussed her goals for care and what she desired from Hospice in assisting her with this illness. Her goals were to have control over what was happening and as she became weaker how she could still have this control. Once we all fully understood her goals and desires, I noted more changes in her sharing things with me.
This lady had a strong faith, loved playing the piano at church and was well loved in the community. Once I was able to change her pain medication, with her permission, she was able to enjoy life a little more. I saw the humorous side of my patient. She shared her life history with me, how she was fluent in many languages which she taught at school. She was an avid reader of many styles of books including biographies and novels.
She started asking questions about her health and what to expect. I educated both the patient and family by supplying resources for them to read, and explaining the processes that they may see. I spent time with the daughter and her children educating them of their role and how they can be of great help to their loved one. As I was doing this it struck me how much they loved one another but rarely showing emotional or physical contact. This was just the type of family there were!
As time passed the condition of my patient changed to the point she was no longer able to be left alone. Firstly she stated to the social worker that she should go into a nursing home so she would not be a burden on her family. The social worker mentioned to her that her daughter and granddaughters wanted to care for her and how this could be both a memorable and special time in their lives. After this was mentioned she decided that it would be wonderful to remain in her home.
Her family moved in to care for her. She was becoming too weak that speaking was too hard so she made little lists for me to discuss on my visits. Some things she wrote were crazy little things to make us all laugh. Oh how her sense of humor carried her though this illness.
Her family struggled with the personal hygiene needs so I sat with the patient one day and asked her if I could bring a Hospice Aide in to assist her. She grabbed her note book and wrote 'I do not know, I have never been good at decision making' to which I replied now you tell me, I could have had the aide in months ago. Her eyes lit up and she just chuckled and chuckled along with her family.
Our Hospice Chaplain visited her for her Spiritual health, this woman's faith was so strong and she never once said 'why me' she took each day as a gift. Her own minister visited regularly.
As her appetite and health deteriorated we were able to supplement her caloric intake with Ensure Products, bring in a hospital bed, over bed table and bed side commode to better provide comfort measures for her.
Pain medication was changed over to liquid which was most beneficial and easier for her to take. Nausea was controlled with medication and lavender scented massages. For her restlessness her family played music or read to her, rarely did she require medication for this.
Not too long before the active dying process started, I sat down next to her bed to inform her of this process. She always wanted me to be upfront with her and keep her informed of the changes I noted. She grabbed my hand which was something she never did with anyone. I asked her if there was anything I could do to make this transition more comfortable or peaceful for her. Was there anyone she wanted to see or could I write a letter for her?
At this stage I knew we had made an impact on this lady's life. She looked at me smiled and whispered "I love you, you are a beautiful person, I would like you to be with me before I die, I want you to pronounce my body and be here for my family". I left her home in tears that day because this is what I love to do. This is my passion to work in Hospice and assist people such as this dear lady. What an honor to come into a person's home and life, facilitate changes where possible to allow a person the right to die with dignity and to die the way they choose to.
The night time phone call came, her blood pressure was low so I gathered up my equipment and headed up to be with her and the family. We were all about to take turns doing the patient's mouth care, giving her regular medications to ease her breathing and pain, and reposition for comfort.
We all sat around her bed, I listened as the family shared stories about their life and how the patient would use humor every day. We all laughed as these stories unfolded. I learned in depth about her prankster ways and dry sense of humor.
As I sat with the family for 3 hours before my patient died, I realized what a difference hospice had made in their lives. They were able to do all they could in caring for their loved one; nothing was too little or too much in how they took over their roles of caregivers. With all the education, they were able to make a difference and they were able to do the very things they thought, at one stage, were impossible or frightening.
My patient died a very peaceful, graceful and dignified death. How this woman impacted my life, the lessons she taught me are immeasurable and how our patients can educate and teach us.
Yes Hospice does make a difference for patients and families who are facing a life limiting illnesses. Being part of the disciplines within our organization working together with pts and families to educate and prepare for the final stage of a person's life, is what I get up for every morning.
I am always asked, 'how can you do hospice nursing'? Why? Because the Lord gives me the strength to get up each day, the words to educate, the arms to comfort, the hands to hold and emotions to show that, I too am human.