Category: Bright Horizon Blog

Hospice: What You Don’t Know Can Hurt

This is the story of one nurse’s encounter with a family where she helps clear up some misconceptions about what hospice is and does.

Hospice: What You Don't Know Can Hurt

I took a seat on the kitchen chair that the daughter brought in. Pulling it up to the double bed, I tried to get close to my patient, a woman nearing the end of her battle with gastric cancer. She tried to return my smile, and I squeezed her hand as I introduced myself. Her daughter circled around to sit on the bed beside her mom. She opened the conversation by saying, “Mom’s been having a pretty rough day today. She is just so weak.”

As we talked, I heard the bedroom door push open further. I recognized her son, Joe, from our brief introduction outside the house and nodded to him even as his sister continued to tell me about her mother’s long battle with cancer. Easing past me, he took a position just behind me, standing against the wall with his arms crossed. He didn’t say anything but I could feel some tension enter the room with him. When there was a pause in the conversation, I looked back and invited him to join our conversation by asking the question, “So have you ever had any experiences with hospice?”

He answered “No” and didn’t elaborate further. I tried again, “I hope I can help you, your sister and your mom understand what hospice is and how we can serve your family.” Emotion quavered in his voice as he said, “I’m not sure hospice is what we need.”

I tried to assess whether or not to continue the conversation outside the room, but I could tell from his sister’s exasperated sigh that this was familiar ground; they had fought this battle multiple times and the wounds were still fresh. He spit out the words,“All I know about hospice is that they give people drugs until they die.” He stiffened his back against the wall, as if trying to hold the house together with his effort.

Consciously relaxing my body language, I turned to face him, offering him my full attention with open posture: palms up, feet on the floor, neutral expression. I reminded myself that he spoke with anger that disguised grief and loss. He spoke words pregnant with the fear of giving up his mother, of letting her down.

He told me about the diagnosis six months prior, followed by surgery, then chemo and complications. He said the doctor told them the treatments were no longer effective. His mom softly interjected, “Son, I heard that doctor say I don’t have long left.” He shook his head. I could tell he felt defeated. In his mind, accepting hospice would mean giving up, giving in.This picture of conflicted emotions presents itself repeatedly in hospice settings. As professionals, we struggle to appropriately address the concerns people have about hospice. Each situation is different and requires sensitivity, creativity and discernment.

I paused before stating gently, “Hospice doesn’t do anything to shorten life or to prolong life. We simply accompany people on their journeys and work to relieve troubling symptoms that might come up along the way such as pain, shortness of breath, restlessness, anxiety, etc.” He turned to face me and I went on to explain as simply as I could some of the basic principles of pain management.

Our conversation rang a bell in my spirit that reminded me again of the sacred duty we have as professional hospice nurses with a powerful arsenal of medicines and interventions at our disposal. We have a lot of freedom in practice; we have earned the trust of medical professionals. Patients and families need to have the confidence that they are doing the right thing in how they use medication. A large part of this process is helping families have appropriate education and expectations of what can be accomplished. For example: complete pain control is a goal but sometimes cannot be accomplished without excessive sedation so we must work together to figure out what is important to the patient. Helping all team members understand the plan and its implementation can help to eliminate conflict for even the appearance of over-medication threatens the confidence and trust we all value.

Mindful of the import of what I was telling this family, I reinforced the teaching about our 24-hour availability. “Call us any time,” I told them. “That is what we are here for. And if you need us to come out, even in the middle of the night, we will do that, too.” Being available and willing to respond to families’ needs goes to the true heart of hospice nursing. For we cannot simply teach them, check it off, and then expect perfect comprehension. Having that phone number is gold. It helps sooth frazzled nerves, allay mental fatigue and overcome simple ignorance of bodily processes.

We took a break from our conversation to notice the cat that jumped up on the bed, purring and settling itself neatly beside the patient’s hip. We all laughed a bit and the patient reached over to rub the cat’s neck. The daughter spoke next and said, “What I think bothers Joe the most is giving up. We have been trying so hard. We have done everything right. Why isn’t it working?”

I stopped cleaning my stethoscope and held it quietly in my hand as I told her, “Hospice is not about giving up. It is about changing goals. Signing up for hospice care indicates a change in focus—almost an “about face”—looking toward quality vs. quantity of life. It means that we continue to do plenty, but just different things than we do when pursuing life-extending therapies.” She and her brother nodded that they understood and I continued to explain more fully, “While chemo, radiation, transfusions are rarely on the list of considered therapies during hospice care, there are times when they do fit because they help address comfort care needs. Also, at times a few of our patients improve temporarily as the complications associated with treatments ease. Sometimes there appears to be a sense of psychological relief after the decision for hospice is made. We always retain the knowledge that there is an opportunity for a miracle. Being in hospice does that mean that a patient cannot be healed. Occasionally, some patients live on and are discharged by hospice as their condition improves.”

Joe walked around the bed and as his sister scooted over, he joined her sitting beside his mom. Taking her hand he said, “I just want to be clear that we will only do what mom wants. We don’t want you all telling us what to do.” His change in posture and position told me that he had really entered our conversation but his words communicated his strong sense of protectiveness toward his mom and a long tradition of fierce independence.

I acknowledged his words with a nod and noticed his mom indicating she wanted a drink. I reached over for the sweating glass of ice water that rested on the beside table, and adjusting the straw, offered her a sip.

“You are so right, Joe.The patient and the family remain in control. We are here to serve your mom and your family and to advocate with the other treatment partners. We will try to listen carefully and follow your mom’s desires. Each person faces death on their own terms.”

“Ok. So what if we decide to sign up today and then change our minds?” Joe lobbed his final volley across the bed with force and conviction, as if daring me to answer. I smiled as I answered, “It is possible to revoke hospice. It is important for patients and families to understand that hospice is not always the correct option. Even with the paperwork signed, there is no permanent commitment. You all can change your mind if a new therapy becomes available or if you simply decide you are not ready.

“I want to rest now.” Their mom dismissed us with a gentle wave of her hand. I quickly finished up my assessment, and we shuffled out toward the kitchen. Leaving last, Joe flipped off the overhead light and blew a kiss into the dim room.

Joy Eastridge
December 2015

Written by:ruben on January 14, 2016

Holiday Tips For Caregivers

“Bright Horizon, through the Alzheimer’s Association, would like to pass on the following helpful information for caregivers during the holiday season.”

Holidays

For most families, holidays are filled with opportunities for togetherness, sharing, laughter and memories. But holidays can also be filled with stress, disappointment and sadness.

Because of the changes he or she has experienced, the person with Alzheimer’s may feel a special sense of loss during the holidays. At the same time, caregivers may feel overwhelmed maintaining holiday traditions while caring for their loved one. In addition, caregivers may feel hesitant to invite family and friends over to share the holiday for fear they will be uncomfortable with behavior changes in the family member.

Here are some suggestions that may help to make holidays happy, memorable occasions.

Adjust expectations

Call a face-to-face meeting or arrange for a long-distance telephone conference call with family and friends to discuss holiday celebrations. Make sure that everyone understands your caregiving situation and have realistic expectations about you can and cannot do. No one can expect you to maintain every holiday tradition or event.
Give yourself permission to do only what you can reasonably manage. If you’ve always invited 15-20 people to your home, consider inviting five for a simple meal. Consider having a potluck dinner or asking others to host the holiday at their home.
Familiarize others with your situation by writing a letter that makes these points:
“I’m writing this letter to let you know how things are going at our house. While we’re looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.”

“You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___. I’ve enclosed a picture so you know how ___ looks now.”

“Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable. Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us and so do I. Please treat ___ as you would any person. A warm smile and a gentle touch on ___’s shoulder or hand will be appreciated more than you know.”

“I would ask that you call before you come to visit or when you’re nearby so we can prepare for your arrival. Caregiving is a tough job, and I’m doing the very best I can. With your help and support, we can create a holiday memory that we’ll treasure.”
Involve the person with dementia

Involve the person in safe, manageable holiday preparation activities. Begin slowly by asking the person to help you prepare food, wrap packages, hand you decorations or set the table. (Avoid using candies, artificial fruits/vegetables or other edibles as decorations. Blinking lights may confuse or scare the person.)
Maintain the person’s normal routine so that holiday preparations don’t become disruptive or confusing. Taking on too many tasks can wear on you and the person.
Build on past traditions and memories. Your family member may find comfort in singing old holiday songs, for example. But also experiment with new holiday traditions, such as renting seasonal videos.
Adapt gift giving

Encourage people to buy useful gifts for the person such as an identification bracelet (available through MedicAlert® + Alzheimer’s Association® Safe Return®); comfortable, easy-to-remove clothing; audiotapes of favorite music; videos; and photo albums.
Advise people not to give gifts such as dangerous tools or instruments, utensils, challenging board games, complicated electronic equipment or pets.
Depending on his or her abilities, get the person involved in giving gifts. For example, someone who once enjoyed cooking may enjoy baking cookies and packing them in tins or boxes. Or, you may want to buy the gift and allow the person to wrap it.
If friends or family members ask what you want for a gift, suggest a gift certificate or something that will help you out as you care for your loved one, like a cleaning or household chore service.
Try to be flexible

Consider celebrating over a lunch or brunch, rather than an evening meal, to work around the evening confusion or sundowning that sometimes affects some people with Alzheimer’s. Also consider serving nonalcoholic drinks and keeping the room bright.
Prepare for post-holiday letdown. Arrange for in-home care so you can enjoy a movie or lunch with a friend and reduce post-holiday stress.
Holidays are opportunities to share time with the people you love. Try to make these celebrations easy on yourself and the person with Alzheimer’s disease so that you may concentrate on enjoying your time together.

Written by:admin on November 25, 2015

Alzheimer’s Awareness Information Fresno, CA | Bright Horizon Hospice

Alzheimer’s Awareness

Fresno, CA – Here is the link to a YouTube video focused on Alzheimer’s disease in the United States. It is a presentation to congress from actor Seth Rogan. Although there were occasional comedic moments the presentation supports Alzheimer’s awareness. Bright Horizon recognizes the impact of Alzheimer’s, and other dementia related disease, to those living in our community. We strive to deliver the highest quality of care to those suffering with this condition as well as meet with the needs of their families.
This video points out that, those suffering from Alzheimer’s are not alone. This is not a disease that people should be ashamed of. Unlike other “top 10” diagnosis Alzheimer’s is not one that health care is actively looking to cure. Those who develop this diagnosis, and the ones caring for them, should not be alone, feel isolated, helpless, or embarrassed. They deserve our help, support, and encouragement.