Skip navigation
All Places > Clinician's Corner

Hospice workers frequently ask the question, “What is most important to you today?” This is a meaningful inquiry, especially considering that the answer might change from visit to visit – or even moment to moment.

 

Not long ago, I asked this question of a kind, elderly gentleman in a nursing home. Without his usual time for reflection, he exclaimed, "I don't know what is most important. There are so many things that are the best!"

 

I was so delighted and inspired by his response I wanted to immediately share it with my team. Unfortunately, I could not report it with the joy and excitement with which he expressed it, so my effort did not match his original enthusiasm.

 

Gratitude carries great value. The old hymn “Count Your Blessings” reminds us of this. Spiritual directors, life coaches, and most anyone employed in acts of encouragement often promote making a list of things for which we are grateful every day. Does this sound like a monotonous chore? What if you are grateful for some of the same things every day and they spill over into numerous lists? What if some days simply seem so gloomy it is difficult to find one thing for which to be thankful?

 

Let us consider the gentleman who’s example I have shared. One might think, should he place a list of pros beside a list of cons, he could easily allow the cons to outweigh the pros. For example, I imagine there are other things he would like to be doing and other places he would like to be; yet he repeatedly expresses gratitude for the nursing facility, its staff, and the friends he has found there. I can imagine he isn’t always served his favorite meals; yet he consistently expresses thanks for his food and for those who help him eat when he is tired. There are so many details of his current world for which he did not plan; but he gives thanks every day. We even frequently find him praying or singing uplifting songs to bless the staff and other patients.

 

I am overwhelmingly inspired, challenged, and encouraged by this kind, elderly friend who – despite physical frailties and numerous unanticipated obstacles – chooses to believe that every day there are so many things that are “the best.” As delightful as I found this experience, the gentleman unknowingly posed a significant challenge to me. If he could find so many good things in his day that he could not begin to choose “the best,” surely I have no excuse for letting daily struggles keep me down. I want to experience each day filled with so much good I cannot choose “the best.”

We often hear of the need for forgiveness, and the necessity to forgive those who have hurt us. In doing so, we find freedom for ourselves. But deep within our human nature we tend to want those who have wronged us to ask us for forgiveness; essentially admit they wronged us and beg for our pardon. This scenario of admission of wrong and request for forgiveness is rarely the case. Forgiveness is often a one-sided choice on the part of the person who feels wronged, without any acknowledgment from the one who caused the harm. But sometimes the gift of forgiveness works to bring peace to both sides in the 11th hour.

 

I once served a gentleman who had been in the dying process for some days. Honoring his wishes, his family sought only comfort care for Bob (not his real name). It was a mystery to caregivers, both professional and relatives, why Bob continued to linger.

 

During a visit when this question was again presented, I asked the family if everyone had visited whom Bob needed to hear from before he could go in peace. The gathered relations became quiet and exchanged glances with one another. Finally one of them announced she would say explain the situation. The others soon joined in telling this part of Bob’s story.

 

According to the family, Bob and his brother had to been extremely close in their early years. Even after they had left home they remain best friends and did everything together. At some point there was a conflict between them that was never resolved. Neither brother wanted to make peace with the other. They had not spoken in many years. Before Bob’s recent decline, he forbid his family to tell his brother of his illness, and told them he did not want him to know he had passed until after the funeral.

 

Wanting to honor Bob's wishes but also sensing about patient and family a deep void that hungered for peace, I asked the family if they would feel comfortable contacting the his brother and asking him to speak forgiveness to Bob over the phone. (Bob’s brother was struggling with an illness himself, which Bob knew nothing about, and was too ill to travel at the time.) The family quickly agreed this was the right thing to do.

 

Shortly after the conversation, the family gathered around Bob, called his brother, explained to him that Bob was dying and the need for forgiveness and peace between them. They turned on the speaker on the phone and placed it near Bob’s ear. His brother openly forgave him for their decades-old disagreement, and asked Bob to forgive him in return. He spoke love and peace to Bob, and said he would see him soon. Bob's family seemed relieved and at peace with the transaction. A few hours later, Bob peacefully passed. As stated, his brother followed a short time later.

 

The need for spoken forgiveness, requested or not, is often such a powerful gift that those at the end of life desperately need before they can make their final transition. It is important to keep this in mind for patients and their families when there is a sense of anxiety and unfinished business between a patient and those they have loved.

 

 

Can a person have too many health care providers looking at their medication profile? How many is too many? From my perspective, EVERY health care provider should be concerned about what medications I am taking. 


This is the time of year when I travel with the nurses for their annual evaluations as they are visiting our patients. It is a great time for me to re-connect with bedside nursing, and although it can be a challenge to fit them all into my schedule, it is refreshing. It also gives me an opportunity to see the great work our nurses are doing every day.


During my visits this year, I began to contemplate the chore of medication reconciliation on our patients. It can be a daunting task for the nurses to keep their medication profiles up to date. Even if the nurse visits every week, there are often times there will be something added or deleted on the patient’s medication list, regardless of whether the patient resides in assisted living, a long term care facility, or their own home. 


It is very important for our patients and families to share each and every medication being taken with the nurse, EVERY time they visit even if it is something they don’t take often. Items such as over-the-counter Tylenol or creams for skin care need to be reported and recorded. This is one way we monitor for safe practices.


Even when I visit my own physician, they are reviewing my medications each and every time I go. It is important for our nurses to take the lead and ask about those medications, but it is just as important for the patients or families to openly share everything they are taking, even if they are just vitamin supplements. Some people may think it is unnecessary to review the same medications each week; however, given my experience this year on my visits, there were plenty of additions or changes that otherwise would have gone unnoticed.


So in answer to the question – I don’t think there are ever too many health care providers looking at our medications, keeping us all safe.

I found her lying in bed, listening to music. My visits to the nursing home were usually in the morning after breakfast and as usual, she welcomed me into her space. Clara was a beautiful woman, tall and slender. In her younger days, she was a model for a department store in Chicago. Now she had a weak heart and was having more confusion lately.


On one particular day, I noticed her hair had just been fixed and I commented that she had the most beautiful white hair. “White?” she exclaimed! “My hair is white, when did that happen?” Clara looked in the mirror often during the day to check her makeup and hair. I was as surprised at her reaction as she was with my announcement of her hair color. Within just a couple of minutes, Clara moved on to several other topics and never seemed to remember the earlier conversation.


Over the course of 10 years, I experienced many patients with some level of confusion and forgetfulness. I also learned several key guidelines that help me know how to improve the way I communicate so not cause additional distress.
I think the first thing to remember is that if we live long enough, some of us may also be faced with dementia and we should consider how we want to be treated.


Speak calmly, slowly, and simply. Smile as you talk. When their perceptions or understanding are incorrect, don’t criticize or argue to make your point. I once observed a daughter repeatedly try and get her mother to understand that they no longer lived on the farm, even to the point where she was arguing. Understand that your loved one is not trying to be difficult or argumentative. I would suggest instead of allowing yourself to react and get upset, change the topic of conversation.


Include the person in discussions and don’t talk about them as if they are not there. Think about how that would make you feel. Isolated? Embarrassed? Demeaned?


Some people with short-term memory loss may benefit from reminders or cues. You may try talking about events from years ago. They may be more capable of talking about growing up, serving in the war, how they met their spouse, or raising a family.


Ernest would talk all day about how he met the love of his life. It brought him great comfort to talk about how he courted her. However, he didn’t always remember the names of his children, what he had to eat that day or how to find his bedroom. His family learned not to ask him questions like, “What’s my name?”, “Dad, what year is it?” or “What did you eat for dinner?” Instead, they would say things like, “Hi Dad. It’s me, Bill,” “Can you believe it is 2017 already?” or “I heard you had chicken for dinner. You love chicken.” Other times his family would show him family pictures to help him remember and open the door for sweet conversations that the family treasured after his death.


If you do ask questions, make sure they are targeted questions with brief answers. Questions that require long detailed answers may only embarrass or cause your loved one to be frustrated. Instead of asking “what did you do today?” you may say, “did you enjoy the music at dinner?” A one or two-word answer may help them feel like they were successful and help them feel good about themselves.


Finally, communication isn’t just words. As human beings, we need and crave human connection. A very dear lady in my life lost all ability to talk or even smile. I would sit with her, talk softly and hold her hand. I was communicating my love for her in the simplest way -- with touch. Giving a hug or holding someone’s hand lets them know they are still needed and they are worthy of your love and affection.


On my next post, I will share how I learned a new way to communicate with advanced dementia patients and how it was totally by accident.

 

~ Vicki

Socrates once said "An unexamined life is not worth living." I have taken this to heart over the years and believe in this message. I believe that to examine ourselves daily will cause us to change and grow. It is this characteristic that will allow someone to go from being a good leader to a great leader and to also inspire others. It will also create accountability for our actions. Following this principle, I have not only learned to hold myself accountable, but I have grown in my ability to hold others accountable, too.

 

I realized over the years that giving feedback on behavior can help others grow professionally. I have been privileged to have people give me feedback over the years and it helped me grow into the leader I am today. If I had to point out one characteristic that is important in a leader, I would have to say it is self-reflection. You can teach people to do many things, but it is a very difficult thing to teach self-reflection. Being able to do this is the characteristic of a successful leader.

 

When I was new to nursing, my first mentor, Kate, told me that I needed to work harder and have my documentation completed by the end of my shift. At the time, I thought this was an impossible task and I am sure my face probably showed that I did not like her feedback.

 

After I got over it, I took her words to heart and kept working at this skill. As I left orientation and had patients on my own, I continued to work toward this goal. Another new nurse and I talked about this and worked on it together. We were so happy when we finished with our documentation before the next shift came to take over. 

 

One day Kate came to take over the patients and the other nurse and I were rocking in hallway chairs around the nurse’s station. Kate said “I see you have taken my words to heart and have your documentation completed.” We all laughed together. We realized Kate was right; documentation done timely was important for good patient care and for continuity of the records.

 

Looking back on it a few years later, I realize that Kate cared about me enough to give me honest feedback and to help me grow. She mentored me! How kind of her. Later, I also role-modeled this good nursing behavior to my friend and it changed us both. This was my first realization at how important honest feedback is for growth. I was lucky to have a Kate in my life at such a young age.

 

When hospice staff are visiting the home or giving care in one of our inpatient units, it is important that they understand what a caregiver or patient wants or needs from them. Please be sure to let them know your feedback, whether it is positive or constructive criticism about the care they are providing. Hospice staff are willing to listen and respond to questions and care needs. I always tell staff “we cannot fix what we do not know is broken.”

 

Who have you given feedback to lately? Who have you thanked for giving you feedback? Things to think about.

chaplainandrea

The Walk

Posted by chaplainandrea Employee Mar 30, 2017

Celeste (not her real name) was in her 80s. I thought when I met her what an incredible woman she was and that our paths would likely never have crossed had I not visited her in her home.

 

She was a classy lady with the perfect amount of sass. She had draped over her lap one of many quilts I noticed around her home. I asked if she had made the quilts. “You think I didn’t?” she asked with a sly smile and she shared some of her favorite characteristics of one of her quilts.

 

In the midst of a delightful conversation, Celeste suddenly grew quiet and timid. In a lowered voice, she said, “I have something I want to tell you.” She added cautiously, “I don’t want you to think I’m crazy.” I assured her I would not.

 

Celeste quietly began to share a very personal experience. She said her husband had been visiting her. He asked her to go for a walk with him. He said it was not very far and would not take very long. Celeste was a little afraid as her husband had been deceased for many years. She told him she could not go now because she had something else to do. After, she did not see him again.

 

Celeste became tearful as her story faded to silence. When she looked at me, she asked sorrowfully, “Do you think I made him mad? Do you think he will come back?”

 

At that moment I felt the need to press back my own tears. I told her I didn’t think he was mad and I thought he would come back when it was time. She smiled brightly through her tears and nodded, seeming to exhale in relief.

 

Celeste and I continued to share a meaningful visit and time of prayer. When I left her home, I carried a great sense of gratitude for the gift of meeting her. I found myself frequently recalling her smile and her wonderful mystery.

 

A few days later, I received word that Celeste had passed peacefully. The same tears I fought when she shared her beautiful story now flowed freely as I imagined her husband had returned and she had gone with him for that walk.

 

At hospice, we have an extraordinary opportunity to walk with our patients through some of their most intimate spiritual experiences. I feel fortunate as so few understand what it’s like to live with glimpses beyond the veil. My prayer is that we all be so present as to give them the gift of trust which allows the ill a sacred space to share their soul-deep mysteries.

dburton

Simple Pleasures

Posted by dburton Employee Mar 24, 2017

As someone approaches end of life there are multiple questions, concerns or decisions that an individual may need to make. As a nurse caring for those individuals, I have often questioned patients if there is something they wish they could accomplish or do which would bring additional comfort to the end of their journey. One patient will forever stick in my mind as it changed my view on what quality of life really means.

 

Jesse (not his real name) was a young man in his 40s who was diagnosed with spinal cancer who was bed-bound, because sitting up in a chair for short periods of time brought him a great deal of pain. His wife and young son visited him daily at the nursing home. Jesse was a simple man who lived a simple life, and it was easy to see that his family is what mattered the very most to him.

 

During one of my visits with him, I asked if he could do one more thing with his family what would it be. As the biggest smile came across his face he answered, “I would have a picnic with ice cream!” We talked about how we could have a picnic right there in his room, but he made it perfectly clear that a picnic was not supposed to happen indoors. He agreed it would be worth the pain to be able to see the outdoors one more time.

 

I began to talk with the hospice team about the possibility of making his wish for a last picnic a reality. It is important to mention that it was mid-February in Kentucky, so the chances of a picnic were going to be slim to none. However, we talked with the family who decided it was an excellent idea and that they would dress warm and have the patio off of his room all set up “picnic style.”

 

The day arrived and we were blessed with unseasonably warm temperatures, bright sun and no snow on the ground. Jesse arrived at the picnic with multiple blankets, an extra dose of pain medication and eyes beaming!  As he enjoyed a couple of bites of a sandwich the family begin to reflect on the multiple picnics they had, all the parks they had visited and which ones had the best playgrounds. 

 

To top it off, his wife came with a baby bunny (on loan) from the local pet store for Jesse to hold and cuddle because he always “loved animals.” According to his smile the day was complete, but Jesse turned to the hospice team and asked, “so where is my ice cream?” So, we all enjoyed ice cream in February and didn’t have to worry about it melting!

 

That evening Jesse became unresponsive and died a short three days later. There is not a February that has passed that I do not remember Jesse’s special day and what it taught me. Quality of life really isn’t about the grand things that we can do for each other, but rather the simple task of being in the moment with those we care about. 

 

Families and caregivers have questioned me throughout the years as to what they should “do” at this point in their loved one's life. My answer has always been to listen attentively to what they are truly saying to you. Don’t take anything for granted, tell them you love them, and if there is something special that can be done that is meaningful to the person do it!

 

Enjoy the simple pleasures, cuddle that baby bunny or have ice cream on a cold winter day!

Dottie (not her real name) is in her 80’s, weighs less than her age and resides in a nursing home. She is confused and has difficulty completing her sentences.  Dottie will hold her head and say, “My thoughts are lost”. When she first became our patient, she was very articulate and enjoyed conversing about her life. We felt her sadness and grief as she realized her loss.


Dottie’s daughter found a journal written by her mother and she wanted me to read it in the hope to understand her mother better.  I didn't realize at the time, just how valuable this journal would become. The journal begins in January 1998 and includes writings over a four-year period. Her writings are reflections about her life, the meaning behind her beliefs and actions, plus insight into weaknesses. After reading and glancing through a few pages, I realized how tragic it was for her to lose her thoughts; It was clear that they were extremely valuable to her. I knew that I would use the journal during my next visit. 

 

During the visit, Dottie held the notebook in both hands and caressed it as though she was getting acquainted with an old friend.  “May I open it?” she asked. As she turned to the first page, she began to read out loud.  After a few sentences, she asked, “Did I write this?” As she continued, she flipped through pages, reading randomly. “Did I write this?” she asked several times. Dottie had been an avid reader but had lost the ability to focus and reading was no longer an enjoyment.  But here I was, witnessing her read page after page of her deepest thoughts. Dottie became the teacher when she read a section out loud and then asked, “What does this say to you?”


As the visit came to a close, Dottie said very clearly and with a tear in her eye, “I hope you don't mind if I tell you that I think I have a new dear friend.” She asked if she could hug and kiss me goodbye.  Dottie is not usually one to show such affection and this behavior is evident of how deeply moved she was by the experience.  Dottie’s ability to express herself became more fluent, though she remains confused. The journal seems to ground her and take her to a place and time where her thoughts are clear. 


I received a wonderful gift that day. It wasn't the beautifully written journal or that the daughter had the foresight to offer it to me.  The gift was when I was able to use it to help Dottie find her thoughts once again. The joy she experienced, was the most precious gift I could ever receive. 

 

Excerpt from Dottie’s journal 2/5/99
“…I think I am grieving the last phase of my life. I can accept change but this will take some time.”

Are our shoulders really supposed to be attached to our ears?  That’s the question I started asking myself, one day, when I became consciously aware of my posture—shoulders to ears pose.  My body was showing the effects of stress and I didn’t even realize it.  It raises the question; have I become too comfortable with stress that I no longer recognize what it's doing to me? 

 

That's when I started to ponder what the source of my stress was, and oh wow, what an eye opening experience.  My plate was so full I wasn’t aware of the timing of multiple things happening all at once, that required my attention, like baby showers, work projects/deadlines, starting school again and the list went on and on.  Stress can affect anyone, especially those that may be a primary caregiver for another person.

 

I have heard a great deal about stress management through the years, but I stumbled across an article that reminded me of some very simple things that could help me, and perhaps others. 

 

It’s noteworthy to acknowledge that the first thing that jumped out to me was a list of statistics in an article titled, "Twenty Ways to End Your Partnership with Stress." The article stated that 77 percent of people regularly experience physical symptoms of stress and 76 percent experience psychological symptoms; while 48 percent acknowledged an increase in their stress level over the last five years. 

 

Whew!  So I am not the only person sitting with my shoulders near my ears!  There are several things we can do to help to manage our stress, many of which we have frequently heard, like exercise regularly.  So, if regular exercise releases endorphins to help us manage stress responses, then those of us that are “desk sitters” must find a way to get up and walk around the office periodically, or at least stretch our arms, legs and neck several times a day.  But, finding ways to fit those little breaks into our day can even pose a problem—added stress. 

 

I appreciate the simplicity of the question “will I be stressed about this in 5 years?”  If the answer is yes, then it deserves my attention, and if the answer is no, then I need to be like the frozen princess and “Let It Go”!  I need to remember to smile.  Smiles are not only contagious but they can also help to add positivity to whatever we are dealing with or working on at the time.  Don’t be afraid to laugh.  Laughing out loud can improve your immune system, relieve pain, stimulate your heart, improve your mood and stimulate circulation.  It can be addictive as well!

 

Other things discussed in the article included the positive effects of journaling, becoming more assertive, resisting procrastination and perfectionism and giving yourself permission to say no.  It’s important to find ways to relax and recharge. Perhaps start with a comedy, a good book, saying only positive things to yourself or confiding in a friend.  A caregiver that is able to steal away to themselves for even a few minutes, perhaps with a short walk or just some quiet time, can be refreshed and recharged.  Sometimes the quiet solitude to allow your mind some rest and to think of nothing can be very soothing—but how many of us seek those moments? 

 

If we don’t learn to handle stress in more positive ways, not only will our health suffer, but we will be a very funny looking society with a large number of people walking around with shoulders hanging on their ears!

 

For more information on this topic read the article Twenty Ways to End Your Partnership with Stress.

As I sat with her, I knew something was on her mind.  She appeared in distress but denied pain. The hospice team recognized that she was becoming weaker.  She answered all my questions with as few words as possible.  I eventually asked, "Mary, are you afraid that you are dying soon?"  That is all it took for her to begin sharing her fears and concerns.  Her primary distress was that she wanted to share one last message with her four children and she was afraid that she would die before she could make that happen.  Because I asked the difficult question,  I was able to help her write final letters to her children.

 

Mary's letters were filled with "I love you", "Forgive me for not being there for you more", "Don't take life so seriously", "Be patient with yourself", and "Appreciate your lovely family".  She became visibly more comfortable once the letters were written.  In addition, Mary was able to live long enough for all of her children to come home, with each one sharing their own personal message with her.

 

It may be hard to know exactly what to say to someone you love who is dying.  Remember, they may be just as anxious as you and not know how to talk about the things that weigh heavy on their mind and may be waiting on you to start the conversation.   

 

There can be many reasons why we have difficulty interacting with a dying person.  Maybe we don't want to face the fact that our loved one is dying.  It could also be that we just don't feel strong enough emotionally to deal with such intense feelings. 

 

We may have unresolved issues with this person or feel some guilt about the relationship. No matter the reason, it often results in us avoiding interacting with the person, and resulting in our loved ones feeling isolated and alone. This isn't how we want our loved ones to feel.  Most of us hope that we will be surrounded by our loved ones as we get to the end of our life.

 

How do we overcome our discomfort or fear so that we can help our loved one not feel so alone in their journey?   A  good place to start is to simply let your loved one know you are feeling fearful (or whatever emotion you are experiencing). 

 

This shows them you are making the effort to be there for them. Next, try to find out what they need from you.  I have found that the following questions are helpful to opening the door to get conversations started so I can find out what they need from me. 

  • Is there anything you'd like to talk about?
  • What is most important to you today?
  • What is causing you the greatest fear?
  • What makes you hopeful?
  • What do you worry about the most right now?
  • Is there anything that you need some help to get done?
  • What's the hardest part of all this?

 

Sometimes our loved ones don't want or need to talk.  Maybe they are unable to carry on a conversation at all.  They  may just need for us to be present.  You can  hold their hand, read aloud, sing or talk softly.  What better way to honor your loved one than to be present for them at the end of their life.