A Hospice Volunteer Breaks Barriers with Bubbles

by Sherry Rayner, Pathways Hospice Volunteer

The most heart wrenching yet fulfilling cases I’ve had as a Hospice volunteer has been with Pathways KIDS. During this time, I have learned that flexibility is the key and there is always a way to communicate.

My last case was with a Vietnamese family in East San Jose. Their youngest son, Jefferson Vu, was a 4-month-old patient who had a rare genetic disease. My job was to entertain his energetic 3-year-old brother, Truman, so their mother, Tam Vu, could get some much-needed rest and tend to her baby without interruption.

My initial contact by telephone was with the father, Ho Vu, who spoke English fluently. I knew he would be away when I visited each week. My concern was how I would communicate with the patient’s mother and brother, as I knew their English was limited.

As my first visit approached, I felt both anxious and excited. I carried a huge canvas tote bag filled with lots of toys, books and videos. Upon knocking on the front door of their condo, I was greeted by a sweet, smiling young woman and her active and excited 3-year-old son, Truman. Leaving my shoes at the door with families, I was graciously welcomed in.

I was then introduced to their precious baby boy, Jefferson. He was lying very still on a pink satin pillowcase in the middle of their big bed. In direct contrast to the rambunctious Truman, Jefferson was very still, tiny and fragile. He sounded like a wounded baby kitten when he cried. When he opened his eyes you saw big brown eyes looking back at you. His face would light up with the most radiant smile when spoken to softly.

Meanwhile, Truman anxiously eyed my canvas bag to see what I’d brought. Not being able to contain his curiosity any longer, we opened the bag. Out came a small nerf ball and a suction – cupped basketball hoop to put on their closet door. Truman was soon animation in action as he jumped and leaped trying to make a basket. When he made a basket, his Mom and I would clap with joy. During this time, Jefferson, the baby, slept soundly. There were two completely different worlds going on in one small bedroom.

Each week Truman would discover a new item in the canvas bag. Soon, he was helping me carry the bag up the stairs. The biggest hit of all was the “Bubble Machine.” Truman and I would go outside to the porch and play with a battery-operated bubble machine. At the flick of a switch, hundreds of tiny iridescent bubbles filled the air. Soon an excited little boy, ran, jumped, and squealed with joy. The smile on his face was only outdone by the sound of his giggles. He’d race around trying to catch every bubble, breaking it or holding it, letting them crash into him with glee. Needless to say he was hooked on the bubble machine and caught me by surprise when in English he’d ask for bubbles every visit.

One particular week, we were lying looking through his English/Vietnamese Kids Picture Dictionary when he focused on the medical page. He quickly pulled up his pant leg and showed me his scratch. I then showed him a scar I had on my leg. Much to my surprise he leaned over and kissed my “boo boo.” Tears welled up in my eyes as I held him and said, “Thank you, it’s all better now.” I was no longer worried about how we would communicate.

We played together for six months and in January 2007 Jefferson peacefully passed on, at home, in his mother’s loving arms with his brother and Daddy close by. What a cherished journey, never to be forgotten. I’ve learned there are always ways to reach out, but never imagined a bubble machine would be one of them.

About Sherry Rayner

Sherry Rayner has volunteered with Pathways Hospice for over 20 years. With her art teacher education and professional graphic design experience, Sherry is known for the creativity that she brings to her volunteer work. She began volunteering with Pathways after raising a family, care giving for several family members and volunteering with several other organizations. Known for brightening the days of patients of all ages, Sherry has recently specialized in the unique concerns of Pathways KIDS and their families.

Patients Hesitate to Disagree

Patients don’t want to disagree with their doctors, even though they would like a say in treatment decisions, according to a survey published in the Archives of Internal Medicine, July 9, 2012.

When asked, more than 9 out of 10 people said they could visualize asking questions and discussing preferences with their doctors, and 80% said they had the ability to disagree.  But when it came down to it, only 14% of patients reported that they would actually challenge their doctor if he or she recommended a treatment that conflicted with their preferences.

Nearly half of those unwilling to disagree feared being labeled as “difficult”; 40% worried such actions would damage their relationship with the physician; and more than half thought disagreeing with their doctor might negatively affect their care.

The online research involved 1,340 adults who were told to imagine that they had heart disease.  They were then asked the extent to which they would like to be involved in their treatment decisions.  The treatments might include options such as medications, bypass surgery or angioplasty—which have similar long-term outcomes, said Dominick Frosch, from the Palo Alto Medical Foundation Research Institute and the University of California, Los Angeles.

Nearly 70% of the survey participants said they preferred making medical decisions together with their doctor, each contributing equally to decisions about treatment.

“We know when patients are surveyed directly they really want to participate in their medical decisions, but are very nervous about this idea of pushing back against doctor recommendations for fear of being labeled a ‘bad patient,’” said Dr. Michael Barry, president of the Informed Medical Decisions Foundation and a primary care doctor at Massachusetts General Hospital in Boston. 

Barry did not participate in the research but his foundation financed it. “I think getting over that culture—that there’s a right answer based as a clinician on your preferences—is what we’re facing. Clinicians are the experts in the options and the outcomes of the options, but patients are experts in what’s best for them.”

Despite current focus on patient-centered care, the authors found that these fears prevent shared decision making.  They noted that poor communication itself can cause inferior outcomes.   A study published in July, 2012 in the journal Perspectives on Psychological Science reinforced this with findings that patients’ feelings of autonomy, competence and relatedness were associated with better mental and physical health.

Frosch cited patients who won’t take their hypertension medication because they didn’t want it in the first place as an example of miscommunication that can lead to worse outcomes.  Frosch said that when it comes to doctors they need to “create a safe space for patients to be able to speak up and express their preferences.” 

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 25.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

A Twist on Cultural Diversity

In the Bay Area, where diversity is the norm, caregivers often represent cultures from all over the world, while the residents they care for may be mostly white, Anglo-Americans whose only language is English.  Perhaps a look at Anglo-American culture will reveal ways to improve interactions between caregivers and residents.

In an ideal world, two people trying to communicate would each reach out to understand the other’s culture.  Realistically, residents may not be capable of learning about the caregiver’s culture to meet the caregiver halfway.  It defaults to the caregiver to bridge the gap.

Generalizations

Although no statement about someone in a particular culture holds true for all members of that culture, we can make useful generalizations that steer us in the right direction.  For example, Anglo-Americans tend to be:

• Time oriented and more rigid about times: 10:45 means exactly 10:45.
• Direct, with less socializing before getting down to business.
• Less formal, speaking and acting casually.
• In general, Anglo-Americans want to be pain-free and may not be as stoic as some other cultures.  They may ask for pain medication where a person from another culture might “tough it out.” 

Comfort zones

Anglo-Americans may be more open about discussing personal matters, illness, and dying than others. 

If a resident wants to talk about a subject that makes you uncomfortable, you may want to find someone else who might be able to interact with him more directly—perhaps someone from social services, a chaplain, or another caregiver.

Researchers have demonstrated that Anglo-Americans generally require a larger personal space around them—in other words, they don’t stand as close when talking as people of other cultures do.*  For instance, they may become uncomfortable and step back if they feel another person is standing too close.

Independence

Anglo-Americans as a whole tend to be more individually oriented and like control. They leave less to fate and want to direct their own lives. American law requiring informed consent is based on the principle of autonomy—freedom of choice for the individual.  In other cultures the family or physician may make decisions for a patient, whereas in the US the individual is considered more important to decision-making than the family. 

Many Anglo-Americans see themselves as having a pioneer spirit and prefer not to be dependent on their children for care or support, while in other cultures it is expected that older people will live with their adult children. 

Best practices

Whenever cultures differ there is plenty of room for misunderstandings.  Usually neither is right or wrong—just different.  The best practice for communicating smoothly is to ASK.  Ask family members or the resident about how things are done in their family.   People are usually grateful that you are asking and appreciate that you are trying to learn about how they like to do things.

*The New York Times, “In Certain Circles, Two Is a Crowd,” Nov. 16, 2006.

This article was originally published in Pathways & Partners Newsletter - Issue 25.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Communicating with Residents

Be Heard Better

They are just little things, but they make a difference in reducing frustration for you and your residents.  We’re talking about techniques you can use every day to make communication smoother and more satisfying.

First let’s look at body position.  Standing over a resident who is sitting or in bed may feel threatening, especially if you are very close.  Research has shown that patients thought that their doctors stayed longer at the bedside than they actually did when the doctor sat down.  So try sitting down to appear less hurried. 

When people have hearing problems, as many older adults do, it is important to face the person directly and have your face at their eye level.  The shapes our lips make when speaking and expressions give residents a lot of clues to what we are saying.  It should go without saying that we should make sure hearing aides are in place, are turned on, and have fresh batteries.

Next we should speak slowly and clearly, enunciating our words precisely—slow down.  Older ears need more time to decipher what you are saying.  If you also have an accent, slowing down your speech will help older, hard-of-hearing adults understand you better.  It also helps to use gestures to supplement what you are saying.  For example, if you want the resident to sit in a chair, pat the chair or sit down to demonstrate what you would like.

By paying attention to the little details in our communications with the elderly, we can make the interchange more satisfactory for them and us!

This article was originally published in Pathways & Partners Newsletter - Issue 24.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

What You Say Without Speaking

It’s estimated that up to 93% of all communication exchanges are nonverbal.  That means facial expressions, gestures and the way we stand all say something—of which we are often unaware.

For nearly 20 years medical schools have been required to teach communication skills, mainly due to research that links physician-patient communication with patient satisfaction and health care outcomes.  They offer everything from courses on lectures, video recording and self-assessments.

But, writes New York Times columnist Pauline Chen, few schools offer courses on facial expressions and body language, “despite a growing body of research suggesting that nonverbal communication may be as important as verbal communication. Important nonverbal cues in physician-patient interactions can include subtle body gestures, body positions, eye contact, facial expressions, and touch.”

One of the most powerful tools we have is eye contact, and how much we are willing to give to patients.  It tells patients they are being listened to (a great satisfier in patient interactions).  Do you nod to let them know they have your full attention, or does it look like you are a million miles away while they tell their story?

A recent study in the Journal of General Internal Medicine (JGIM) found that black physicians used positive nonverbal cues better than white physicians, although they sometimes gave contradictory nonverbal signals.  A 1994 study had shown that women physicians tend to give male patients conflicting nonverbal cues, like smiling while speaking in an anxious tone of voice.

Experts suggest physicians note their body language: Do you cross your arms, look away or make notes while the patient is speaking?  Or do you look engaged, touch the patient’s hand, and appear unrushed? Experts say nothing is more powerful than imagining yourself in the patient’s place to put things in perspective.  

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 23.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Discussing Goals of Care with Very Ill Patients

“Words matter. What clinicians say and how they say it hugely affect patients. Communicating about emotionally and medically complex topics such as advance care planning, preferences for care, prognosis, and death and dying is challenging,”   Steve Pantilat, MD, Professor of Clinical Medicine and Director of the Palliative Care Unit at UCSF wrote in a 2009 JAMA article.

Pantilat recently spoke to an audience of more than 100 physicians and other health care professionals at a Nov. 29 ethics conference held at El Camino Hospital in Mountain View on “Better Words to Say: Communicating with the Very Ill Patient.”

“It’s not about the patient’s willingness to have this kind of conversation, but about [physicians’] willingness to have the conversation,” said Pantilat.
 
Discussing end-of-life issues with patients is not associated with depression, sadness, terror or worry according to research done by Wright and published in JAMA.  In fact, this sort of conversation leads to better quality of life, fewer invasive interventions and better outcomes for caregivers.  But how do we go about having the conversation?  Here are some of the highlights of that talk and some useful approaches Steve Pantilat has learned over the years.

Ask open-ended questions to establish what the patient and family know.
 
Examples of questions he asks are: “When you think about what lies ahead, what worries you the most?” and “When you think about the future, what do you hope for?”
 
The answers to these questions may be very different than you anticipated and may guide care decisions.  For instance, if a patient says he wants to have chemotherapy and visit his home town, the physician may recognize that the visit may not be feasible after chemotherapy, and that if it will not significantly change the outcome of the disease, perhaps the patient should take the trip first.

Listen and sit down.
 
Pantilat referred to a well known study done in the 1970s that demonstrated that patients perceived their physicians’ visits to be much longer than they actually were when the physician sat down to talk with them.

Pantilat suggests that physicians listen for at least two minutes before talking (which he admits may seem interminable at the time).  He emphasizes the value of not interrupting since most important things don’t come out at the very beginning of a conversation.

Avoid jargon, use simple language and check understanding.
 
Patients will often nod as though they understand although they are clueless to the meaning of what you are saying.  Pantilat says that the answer is usually “No” to the question “Do you have any questions?”  But he has noticed a distinct difference when he subtly rewords the question to say “What questions do you have?”

“Accuracy is not critical,” said Pantilat.  Patients and families don’t need to know an exact prognosis, but they do need a realistic frame of reference.  He suggests using ranges such as “hours to days,” “days to weeks,” or “weeks to months.”  One person may interpret “not long” as days while another may think it refers to a year.

Offer a prognosis. 

“False hope is not hope because it is not based in reality,” said Pantilat, reminding his audience of the research published in the NEJM that found that TV patients had a 79% rate of survival with quality life after CPR, whereas in real life the numbers are far grimmer.  The problem is that the public gets its information from television.
 
Discuss death explicitly.
 
Talking about death can be a great relief, says Pantilat.  He suggests practicing difficult conversations and in this setting suggests phrasing such as, “Many patients with lung cancer tell me they think about the possibility of dying.  They have questions about this.  How about you?”

Remain sensitive to the patient’s culture.
 
Pantilat cautioned about assuming all persons of a particular culture have similar beliefs and suggests the solution lies in asking, “In your family how do you make medical decisions?”  His experience has told him that patients often know much more than physicians or families realize.   Although they may never have been spoken to directly about their disease, the visits to a cancer center, increasing treatment, arrival of family members from afar and a host of other clues tell them about their condition.

Pantilat does caution that we should always ask how much the patient wants to know, regardless of what the family has said.  To be sensitive he often asks, “I have information about your condition.  Some patients want to know the details, others prefer to have me talk to someone else.  How do you feel?”

Use better words.
 
There is never a time when it is appropriate to say, “There is nothing more we can do.”  Pantilat suggests instead, “There is no more we can do to cure your disease.”  And rather than arguing with family members about the futility of treatments, Pantilat likes to put himself on their side by saying, “I wish there was something we could do to make your cancer go away.”

Ask helpful questions.

Questions such as, “Would you like us to do everything possible?” are not helpful and will always be answered “Yes.” However, “everything” may mean all possible curative medical treatments to the physician, while the family interprets it to mean all possible efforts aimed at keeping their loved one comfortable.  Pantilat finds it clarifying in this situation to ask, “How were you hoping we could help?”

Be aware of your non-verbal communication.
 
Asking someone if they have any other questions while your hand is on the door sends a loud message and the answer will usually be, “No.”

Pantilat concluded by acknowledging that this process is usually more than one conversation and that physicians should share the responsibility with others such as the palliative care team, social workers, and chaplains.  Discussions about goals of care are good for patients and families: Use better words.

Visiting a Friend or Loved One with Dementia

Dementia is a progressive disease that is measured not in months, but in years.  As the disease progresses it may become difficult to visit the patient—he may not recognize you, she may not be able to converse with you, or you don’t know if the person even realizes you are there.

Why Visit?

You may question if there is any reason to visit any more.  With dementia it can be hard to know how to be supportive, especially at the end of life.  

There is a good reason to visit—you can make a difference.  The focus of visits shifts; instead of expecting an exchange of pleasantries, your motivation becomes, “What can I do to improve quality of life?”
 
Your visit really begins with you, at home.  You may want to think about your feelings.  Am I frightened I too will end up with dementia? Am I afraid of the end of life?  What do I want to accomplish in my visit?

Planning the Visit

Visiting a person with dementia can be frustrating and unrewarding when you feel as though there is nothing you can do.  You may be able to make the visit more meaningful with some preparation.

Gather together some supplies so that you are prepared for whatever the situation is when you arrive.  A few ideas are:

• Knitting, a crossword or a book to read if the patient is sleeping
• A picture book with large colorful or interesting images
• Interesting photos someone has sent you in an email
• Music you know the patient likes
• A newspaper column, such as Dear Abby or the sports page to read aloud
• A photo album
• A special memento
• A letter from a mutual friend to share
• A nail file and polish for a manicure
• The patient’s favorite perfume
• A favorite food
• Lotion for a hand or foot massage
• A pet, if allowed

The sky is the limit.  Use your imagination and everything you know about the person to come up with ideas of things to share.  The resident may want to listen to news about her book club, his former poker buddies or the doings at church.

The Visit

Begin with the basics.  The visit will be more successful if the resident is clean and dry, not hungry, and comfortable.  Ask for help if needed.
 
Pain can sometimes appear as negative behavior.  People with dementia may withdraw, strike out or display other “bad” behaviors when in pain.  If you have seen behavior changes that you suspect may be due to discomfort, you may want to ask the caregiver for a trial of pain medicine.

Think about providing comfort through the senses.

Touch

We all need to be touched, but seniors are often deprived of this essential element to wellbeing.

• Our society is youth-centered and may look at wrinkled skin as ugly, not weathered with experience.
• Among hospitalized patients, the only ones touched less than the elderly were people who were psychotic.

Touch can be “instrumental;” that means required to carry out activities such as bathing or dressing.  But research shows that people with dementia can tell the difference between this and “expressive” touch.  Expressive touch is when we hold hands, put an arm around the person, or give a back rub or hug.  This conveys acceptance, nurturing and caring.

Expressive touch helps the elderly feel less isolated, dependent and depressed.

• One researcher found that it also made the toucher feel better.  They felt this non-verbal communication conveyed trust, reassurance, and love, and that it instilled hope.
• Others described touch as making a person feel psychologically worthy and have a sense of being cared for and cared about.
• It is no coincidence that the ultimate form of punishment is solitary confinement—no touching.

Caring touch can trigger the brain to release endorphins and serotonin—natural chemicals that suppress pain and depression.  This is one reason massage can lower the perception of pain.

• Massaging a loved one’s hands or back can help significantly while waiting for pain medicine to work.
• Brushing the resident’s hair and applying lotion have the same affect.

Hearing

We know that hearing seems to remain intact until the very end of life.  This gives us an opportunity for providing comfort.

• Soft music can be very soothing to an agitated resident.
• If the resident has been religious, he may appreciate hearing hymns and spiritual music.  Bring in CDs or tapes of his favorites and a CD player to play them on.
• You can even sing or hum a familiar tune.
• Bring in a music box.

Communication
 
If you are not close, calling residents with Alzheimer’s disease “sweetie,” “dear,” “cookie,” or “honey” may cause more resistance to care.  Experts have known for a long time that mentally competent elderly residents in nursing homes are irritated by being “talked down to.”  Recent research shows people with dementia are more agitated when talked to this way.

What they found was that residents were more resistant if the communication was what they dubbed “elderspeak.”

• Saying things like, “Are we ready for dinner?”  implies that the person isn’t able to act independently.  An alternative would be, “Are you ready for me to help you with your dinner?”
• The tendency of caregivers to use “elderspeak” increases with the caregivers perceived level of infirmity of the resident.
• We need to remember that residents were high functioning adults.  The more we remember their earlier lives, the more we respect them as people than as a disease.

Just chatting can be very reassuring.  “I spoke with Michael today, back in Virginia.  He says he and Alice are going to take a trip to Vermont.  They are going as soon as the snow melts.  It’s February now, so it may be a couple of months.”

Maintain the resident’s dignity in small ways: use terms like “disposable briefs” instead of “diapers.”  Remember to speak slowly.  People with dementia take longer to process what you have said.
 
Sense of Smell

This sense is so basic that when we smell a certain odor, it can bring back memories from decades ago.

• Aromatherapy takes advantage of this by providing pleasant smells that might bring back pleasant memories.
• Bring a rose, a lavender sachet, or a scented candle that smells like pumpkin or apple pie.
• A favorite perfume or aftershave can brighten spirits.

Taste

• Bring in a favorite food or drink.  The resident may love Fritos or M&Ms and they won’t be on the menu in assisted living.
• Cleaning the mouth with minty toothpaste or mouthwash on a 4x4 may be refreshing.

We have to be very careful about anything in the mouth at the end of life.  With dementia, all the muscles get weaker and weaker—including the muscles for swallowing. 

• Food or fluids can easily get into the airway, causing aspiration pneumonia.

Textures

• A resident in a facility has little chance to experience unusual textures, such as soft fur or a smooth, cool stone.  A pet or even a stuffed animal may provide comfort.
• Wrapping someone’s hands or feet in a hot, wet towel might feel very soothing and relaxing—the spa treatment!
• Find a way to warm a flannel blanket to wrap the resident in.
• Smooth the sheets or put cool, clean sheets on.  Change the pillow case or turn over the pillow.
• Open a window to feel a breeze.

Imagination

Use your imagination.  Think about what would bring you comfort.  What would feel good to you?  For each visit plan a simple, new, creative way to bring pleasure, serenity or comfort.  Quality of life will improve for both of you.

Want to Learn More?

Visit our website's Caregiver Resource page for more information and helpful hints when caring for a friend or loved one with dementia.