Power of Music

Music is a powerful force that can stimulate strong emotions within us.  Harnessing that power can benefit the seriously ill by improving their quality of life.  In a 3-year study Sandi Curtis, a music therapy professor at Concordia University in Montreal, Canada, divided university music therapy students and musicians in to pairs working with 371 participating terminally ill patients from 18 to 101 years old.  Participants were seen for a single music therapy sessions from 15 to 60 minutes long with the goal of enhancing pain relief, relaxation, mood and quality of life.

“Our study showed how music therapy was effective in enhancing pain relief, comfort, relaxation, mood, confidence, resilience, life quality and well-being in patients,” said Curtis.  The study was published in the journal Music and Medicine.

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

Spiritual Pain in Advanced Cancer: Symptom for Hospice Chaplains to Address

Quality of Life Can Improve

A vast majority of advanced cancer patients receiving palliative care consider themselves spiritual and religious.  But spiritual pain is still common and is linked to lower quality of life.  This is another place in which the holistic hospice approach to mind and body may improve life’s final stage.

A study done by the Division of Geriatrics and Palliative Medicine, The University of Texas Medical School at Houston, Texas, examined the frequency and intensity of spirituality, religiosity, and spiritual pain, and how spiritual pain was associated with symptom expression, coping, and spiritual quality of life.

Researchers interviewed 100 patients with advanced cancer and had them complete questionnaires assessing their symptoms and ability to cope. 

Spiritual pain was reported in 44%, and was associated with lower spiritual quality of life. Patients with spiritual pain reported that it contributed adversely to their physical/emotional symptoms. There was a trend toward increased depression, anxiety, anorexia, and drowsiness among patients with spiritual pain, although this may not have been significant after corrections.

Every Pathways Hospice patient can have visits from extremely well qualified spiritual care counselors to give unbiased spiritual or religious support to patient or family members, to identify and resolve spiritual concerns, to explore the meaning of life, to administer sacraments, or to be a warm listening presence when needed.

This study can be found at J Pain Symptom Manage.  2011; 41(6):986-94 (ISSN: 1873-6513).

People Want Palliative Care Info

Education Gap

78% of Americans think palliative care and end-of-life treatment should be a part of public discussion, and a whopping 93% believe such decisions should be a top priority for the US healthcare system, according to a survey released this year conducted by the news magazine National Journal and the Regence Foundation.

More than 70% of the respondents agreed with the statement: “It is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life.” While 23% said it was “more important to extend life through every medical intervention possible.” 

Panelists at the health summit at which the data was presented agreed that patients want to make their own decisions.  “It’s really about control,” said John Rother, executive vice president of policy, strategy, and international affairs at AARP.  The survey’s findings suggest many Americans want to better understand what is available to those who have few options left.

Around 23% of those surveyed said they thought the law allows government to make end-of-life decisions for older adults.  Only 40% correctly answered that the law does not include “death panels,” while 36% said they didn’t know.

These results illustrate the huge need for education. Of those surveyed, 54% said their doctor or healthcare provider was the source of information on end-of-life issues, and 75% said they got their information from family and friends.  Only 33% said they trusted politicians and elected officials for accurate information.

Those polled gave the US healthcare system a “C” grade of 5.5 on a scale of 1 to 10.  36% scored the system 7 - 10; 41% rated it 4 - 6; 21% gave scores of 0 - 3.

Pathways has a robust palliative care program under the auspices of our Home Health department.  It is designed for those with serious illness who may still be receiving curative treatment and who may have up to 12 months to live.

More information about this survey can be obtained at: http://www.nationaljournal.com/healthcare/no-death-panels-please-but-poll-shows-americans-can-handle-end-of-life-chat-20110308

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. 

Early Discussions About Prognosis Urged

Individualizing Care

The American Society of Clinical Oncology (ASCO) is calling on physicians, medical schools, insurers, and others to help improve quality of life for people with advanced cancer by discussing the full range of palliative care and treatment options soon after patients are diagnosed with advanced, incurable cancer. 

Currently, physicians talk about prognosis early in the course of advanced disease less than 40% of the time. (In addition to guidelines for physicians, ASCO also released a guide to help patients broach the subject of prognosis and care options with physicians.) 

Critical issues are tackled in a comprehensive article published in the Journal of Clinical Oncology.  

They include:

• Consideration of clinical trials
• Initiating conversations about poor prognosis
• Guidelines for discontinuing cancer-directed treatments
• Individualizing approaches to care
• Empowering patients
• Maximizing quality of life

“Patients with advanced incurable cancer face complex physical, psychological, social, and spiritual consequences of disease and its treatment. Care for these patients should include an individualized assessment of the patient’s needs, goals, and preferences throughout the course of illness,” say the authors.  

The complete article can be accessed at:  http://jco.ascopubs.org/content/early/2011/01/24/JCO.2010.33.1744.full.pdf+html

Time for Hospice?

Pathways can assist you in managing the care  of complex patients, while providing care at home. 

We can help you determine the likely prognosis and if the life expectancy is six months or less, we can suggest ways to approach the patient and family about changing the focus of care from cure to comfort.

If you like, Pathways can have a nurse visit to explain hospice to appropriate patients and families, so that they will have sufficient information to make an informed decision about using their hospice benefit.

Care at Home vs. Hospitalization

Home Fares Better for Heart Failure Patients

Hospitalization, the standard venue for short-term medical care, may be hazardous for the elderly according to a study reported in the Archives of Internal Medicine in September, 2009.*  The study evaluated the feasibility and effectiveness of physician-managed home care for selected patients with acute decompensation of chronic heart failure.  The prospective, single-blind, randomized trial followed patients 75 years or older who had been hospitalized.  They were randomly assigned to a Geriatric Home Hospitalization Service or a general medical ward.

Overall Improved Status

Findings demonstrated no significant difference in the number of deaths or subsequent hospitalizations, but the mean time until the first additional admission was longer for the patients cared for in their own homes.  Only the home patients experienced improvements in depression, nutritional status and quality-of-life scores.

The research concluded that home care is a viable alternative to traditional hospital inpatient care for elderly patients with acutely decompensated CHF.
  
*Arch Intern Med. 2009 Sep 28;169(17):1569-75.

For more information about Pathways Home Health services for patients with chronic heart failure, please visit www.pathwayshealth.org/home-health.

Research Confirms Many Live Longer with Hospice and Palliative Care

Higher Quality of Life Reported By Palliative Care Patients, Study Reports

A recent study published in the New England Journal of Medicine found that among patients with non-small-cell lung cancer, those who received palliative care lived, on average, almost two months longer than those who received standard care. Researchers also found that the patients receiving palliative care reported a higher quality of life through the final course of their illness.

They also found that when patients received palliative care services, they were more likely to elect hospice services. "With earlier referral to a hospice program, patients may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival," wrote the authors of the study released August 18, 2010. 

Pathways Provides Palliative Care

Pathways has a unique and vibrant Palliative Care program that is provided through Home Health. The criteria are that the patient has a prognosis of 12 months or less, has a skilled need (such as symptom management), and that he or she finds leaving home a considerable and taxing effort. (Patients may occasionally visit the barber, attend a special event, go for a drive or attend religious services and still be considered homebound, thus meeting the CMS criteria.) Patients may be receiving active, curative treatment simultaneously with Palliative Care. 

“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Those of us who have worked in the field have seen firsthand how hospice and palliative care can improve the quality of and indeed prolong the lives of people receiving care.” Schumacher added that “The time to learn about these services is before a person is in a medical crisis. Patients and families must learn about these options of care as soon as possible.” 

A Growing Body of Evidence

A 2004 study found patients with 16 of the most common terminal diagnoses lived around 20 days (Journal of Pain and Symptom Management, September 2004). In 2007 a study of 4,493 patients found patients lived an average 29 days longer with hospice (JPSM, March 2007). This latest study adds to the body of evidence showing that many patients live longer with hospice and palliative care, and as a rule both patients and surviving families report better quality of life.