Combating Fatigue in Cancer

Pilot Study

A team of researchers from Australia and New Zealand conducted a small pilot study to help determine an appropriate dose of methylphenidate hydrochloride, a central nervous system stimulant, to treat fatigue in patients with advanced cancer.

They reported in Journal of Palliative Medicine that 5 mg twice daily would be an appropriate dose to test in a definitive study. Ten patients provided consent.

After a three-day assessment, patients received titrated methylphenidate hydrochloride at doses ranging from 5 mg a day to 15mg twice a day. Nine patients completed eight days and five received the maximum dose at day 15. Three patients were satisfied with the results at a lower dose and were not willing to increase it.

The team noted a pattern of rapidly improving fatigue and depression at 5 mg twice daily.

Journal of Palliative Medicine, Volume 13, Number 10, Oct. 2010

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).

Fiber in Diet Reduces Risk of Breast Cancer

What do avocados, blackberries, oatmeal and black beans have in common?  They are all very high in fiber.  So?   

A study done at Soochow University in China has demonstrated that raising your fiber intake can significantly reduce your risk of breast cancer.

After examining 10 studies of dietary fiber intake and risk of breast cancer involving 16,848 cases and 712,195 participants, they found that the more fiber added to the diet, the lower the breast cancer risk fell.

12 Great Sources of Fiber

Avocados, artichokes, raspberries, blackberries, lentils, black beans, broccoli, vegetable beef soup, pears, apples, oatmeal, and barley.

  
The study was published in the American Journal of Nutrition, 2011; 94(3):900-5 (ISSN: 1938-3207).

Egg Allergy Doesn’t Rule Out Flu Shots

New Recommendation

For many years when fall and flu shots rolled around, patients were told that if they have allergies to eggs they should not have a flu shot.  The reason cited was that chicken eggs are used in vaccine production and there were concerns about traces of egg protein triggering reactions.  Turns out, it’s probably okay.

New recommendations by the American Academy of Allergy, Asthma & Immunology (AAAAI) say that anyone with a history of suspected egg allergy should first be evaluated by an allergist or immunologist for testing and diagnosis but can probably receive the vaccination.

Matthew J. Greenhawt, M.D., M.B.A., clinical lecturer at the University of Michigan Health System and James T. Li, M.D., Ph.D.,chair of the Division of Allergic Diseases in the Department of Internal Medicine at Mayo Clinic, co-authored the AAAAI guidelines based on recent studies.

Because about 20% of the US population comes down with the flu each year, vaccination is important.  Many studies have shown few reactions, with a scattering of hives or mild wheezing.  No skin tests are needed, as results aren’t predictive. 

There is also no need to divide the dose. Single-dose studies support giving the entire vaccine dose at one time. Egg-allergic patients must get the inactivated flu shot since this is what was used in research, and they cannot receive nasal vaccine.

You can read more about these guidelines and the research findings at: http://www.aaaai.org

Literacy Affects Health

Higher Mortality

Low health literacy is significantly associated with higher mortality in patients with heart failure. This is the conclusion drawn by researchers who designed a retrospective study of patients at Kaiser Permanente in Colorado.

They examined cases of heart failure from 2001 to 2008, surveying patients by mail.  The patients were also followed for a median of 1.2 years.  Health literacy was assessed using well-established screening questions and categorized as either “adequate” or “low”.  Then researchers looked at hospitalization and mortality for all causes.

The survey response rate was 72% (1547 of 2156); 17.5% of responders had low health literacy.  Low health literacy was associated with:

• Increased age
• Lower socioeconomic status
• Less likelihood of having at least a high school education
• Higher rates of co-morbidities 

In multivariable Cox regression, low health literacy was independently associated with higher mortality (unadjusted rate, 17.6% vs 6.3%; adjusted hazard ratio, 1.97 [95% confidence interval, 1.3-2.97]; P = .001), but not hospitalization (unadjusted rate, 30.5% vs 23.2%; adjusted hazard ratio, 1.05 [95% confidence interval, 0.8-1.37]; P = .73).

This study was published in the Journal of the American Medical Association (JAMA.  2011; 305(16):1695-701 (ISSN: 1538-3598).

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

Should I Tell My Patient Death Is Imminent?

Does Not Increase Anxiety

When your patient with cancer is terminally ill and you have a good sense of the short prognosis, should you tell him?  It is a well-established practice for American physicians to be forthcoming about prognosis, but not so well established when death is just around the corner.

A study recently published online suggests that keeping the patient fully informed in the final days means that they are more likely to have their preferences met and to die in their preferred place.  Their family members are also more likely to be prepared for the death and to be offered bereavement support.

Researchers in Sweden looked at more than 1,000 cases in which patients were informed of their imminent death and compared this with a similar number who were not informed.  Results showed no differences with regard to pain control, nausea, anxiety, confusion, respiratory tract secretions and other end-of-life symptoms.

“People vary about the extent they want to know the truth, if they want to know at all, and in their understanding of what constitutes telling the truth,” the authors wrote.  But, they concluded, “being informed about imminent death does not lead to more unrelieved pain and anxiety during the last week of life.”

The study concludes that, “providing information of imminent death to a patient with cancer at the end of life does not seem to increase pain or anxiety, but it does seem to be associated with improved care and to increase the likelihood of fulfilling the principles of a good death.”  

The study appears in the Journal of Clinical Oncology, July 2011.

Coffee May Help Depression

You may have read about the benefits of one or two cups of coffee a day: reduced risk of type 2 diabetes, Parkinson’s disease and dementia.  Now it looks as though a little java may also decrease the risk for depression.

“There is certainly much more good news than bad news, in terms of coffee and health,” says Frank Hu, MD, MPH, PhD, nutrition and epidemiology professor at the Harvard School of Public Health.

New research published after a 10-year study of more than 50,000 older women suggest that the risk for depression may decrease as coffee consumption increases.  Those who drank 2-3 cups a day had a 15% decreased risk of depression compared to women who drank one cup a day or less.

“People have often worried that drinking caffeinated coffee might have a bad effect on their health, but there is more and more literature, including this study, showing that caffeine may not have the detrimental effect previously thought,” according to lead author Michel Lucas, PhD, RD, epidemiologist/nutritionist at Harvard School of Public Health in Boston.

The study is published in the September 26 issue of the Archives of Internal Medicine.

How Common Are Medical Errors?

Researchers at the University of Utah led by Dr. David Classen found that about one of every three patients hospitalized in the US will experience some sort of mistake during their stay.  The findings indicate the error rate may be as high as 10 times greater than estimated using older methods. 

“It’s clear that we still have a great deal of work to do in order to achieve a health care system that is consistently high-quality -- that is, safe, effective, patient-centered, efficient, timely, and devoid of disparities based on race or ethnicity,” said Susan Dentzer, editor-in-chief of Health Affairs, a peer-reviewed journal that explores health policy issues of current concern that published the research.

The medical errors found ranged from decubitus ulcers and staph infections to objects left in the body after surgery.  It is estimated that medical errors that cause harm to patients annually cost $17.1 billion in 2008 dollars.

“A key challenge has been agreeing on a yardstick for measuring the safety of care in hospitals,” the researchers wrote.  To find the best yardstick, the team tested three methods of tracking errors on the same set of medical records from three different hospitals.

Among the 795 patient records reviewed, voluntary reporting detected four problems, the Agency for Healthcare Research’s (AHR) quality indicator found 35, and the Institute for Healthcare Improvement’s tool detected 354 events -- 10 times more than AHR’s method.

“Our findings indicate that two methods commonly used by most care delivery organizations and supported by policy makers to measure the safety of care ... fail to detect more than 90% of the adverse events that occur among hospitalized patients,” the team wrote.

The research was supported by the Robert Wood Johnson Foundation, which focuses on U.S. healthcare issues.

Grief and the Holidays

Remembering

With the holidays come reminders of their loss for those who are grieving.  Others are savoring a time of joy, sharing memories, and coming together in love. For those who are grieving, the holidays are a vivid reminder of who is NOT there.

Many grieving people find this the most difficult time of the year.  They cannot forget and cannot bury the pain.  Their hearts, minds and bodies are grieving and not functioning in their full capacities, as though part of them is missing.  These are natural feelings—they are all a part of the process—they can share them, accept them, and feel them.

Ways of Coping

 
As the holidays approach, it may help for those who are grieving to start with a blank slate. Accept that they may not have the energy or desire to accomplish all the things that people have come to expect during the holidays.

Rather than do things automatically, they can discuss and think about what they really want to do, what they don’t want to do, and what will be difficult but they want to try anyway.  Grief experts encourage people not to be afraid to change traditions or start new ones.

Equally important is to acknowledge how one feels.  Many recently bereaved worry they will spoil the holidays for others.  According to families Pathways has counseled, the most painful thing is when they try to keep their feelings inside. 

If friends or family members take the initiative to talk about the person who has died, it relieves the tension and creates an opportunity for sharing. 

Managing Grief

 
While there are no universal methods for healing and coping, there are some concrete things a person can do that may make the holidays easier and provide an opportunity to honor loved ones who have died.  

Grieving families can:

• Acknowledge the grief; accept whatever mood occurs.
• Remember they are not alone.  Attend a remembrance event or grief support group.
• Give themselves permission to let go of certain traditions—it’s okay to make changes.
• Share plans with others; let them know how they can help.
• Reserve time to honor the loved one quietly, alone or with others—light a candle, place a photograph on the table, share memories, or make a memorial donation.

And finally, grieving family members should remember to care for themselves at this time.

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. 

Grateful to Give Back: An Interview with Pathways Volunteer, Bill Jennings

Pathways Home Health & Hospice recognized Bill Jennings of Milpitas, California for outstanding volunteer service by honoring him with the Kennedy Award. Bill has been a volunteer at Pathways Home Health & Hospice since 2006, and is an active member of both bereavement and patient care teams.

A retired trainer with Sony Electronics, Bill has found many opportunities to adapt his professional skills to his volunteer work at Pathways. He uses his interpersonal skills when visiting patients and their families, where he provides companionship, and comfort. He uses his technical skills by creating and maintaining two databases for tracking the non-profits’ bereavement library and Integrative Therapies practices.

We recently sat down with Bill to ask him a few questions about his volunteer experiences at Pathways.

What does being a Pathways volunteer mean to me? 

• Self fulfillment, personal growth
• Appreciation from the patients and family you serve

What type of volunteer work do you do and which do you like the best?

• Hospice visits for companionship with patients and caregiver relief
• Bereavement calling to families who have lost a loved one
• Integrative therapies committee

What would you say to those who are considering volunteering at Pathways?

• So many opportunities to give back
• What skills do you have that you would like to share with others?

We appreciate you taking the time to talk with us today.  Thank you, Bill! 

Benefits of Volunteering

Volunteers often find that their greatest satisfaction comes from contributing to the wellbeing of others. They also have the opportunity to apply their talents in fields different from their usual work. For some, volunteering may even lead to a new career. Their gifts of time, energy, and skills fill a unique role that only they can provide. Many volunteers tell us that they learn from working with other dedicated professionals and volunteers.

Finding Your Niche at Pathways

To explore volunteer opportunities at Pathways, call the Manager of Volunteer Services in your area, or visit the “Apply to be a Volunteer” section of our website. After completing an application, you’ll meet with a representative from Volunteer Services to help you find your place at Pathways.

Contact Pathways

In Santa Clara County: 408.773.4219; in Alameda; Contra Costa Counties: 510.613.2017; and in San Francisco and San Mateo Counties: 650.808.4604.  Or visit us online at www.pathwayshealth.org.

Sitting is a Risk Factor for Death

Spending Leisure Time

If you get home from work and want to plop down in a chair for the evening—think again.  You may want to take a break, but get moving again.  A study of more than 120,000 people found that those who spend at least 6 hours of their leisure time sitting died sooner than those who sat less than 3 hours.

People who sit a lot and exercise little are at even higher risk of death, and the effect is stronger for women than men.  The death rate was about 40% higher in women, and 20% higher in men.  The least active women were 94% more likely to die and the least active men were 48% more likely to die.  (100% would mean you were twice as likely to die.)

The study was conducted by the American Cancer Society over 14 years and looked at people 50-74 years old when the study began in 1992.  The main risk linked to sitting was heart disease.

“It is beneficial to encourage sedentary individuals to stand up and walk around as well as to reach optimal levels of physical activity,” according to the study’s authors.  The findings appear in the July 2010 issue of the American Journal of Epidemiology.

Melanoma: Look for the Ugly Duckling

Atypical Even for Atypical

A group at Memorial Sloan-Kettering Cancer Center in New York found that moles in the same person tend to look alike, but a malignant melanoma will often look different from the individual’s mole pattern—the “ugly duckling sign.”

Identifying pigmented moles that look different from a person’s other moles—“even in those with multiple atypical nevi,” said Dr. Ashfaq A. Marghoob, is a practical way to spot malignant melanoma. His research was published in the Archives of Dermatology.

Marghoob and his colleagues had 34 people with varying levels of expertise identify ugly duckling moles in patients with several atypical moles. Participants included 8 mole experts, 13 dermatologists, 5 dermatology nurses, and 8 non-MD medical staff members.  They were shown photographs of the backs and close-ups of moles from 12 patients who had five melanomas, at least eight atypical moles and 140 benign pigmented moles.

All five melanomas and benign moles were identified as different by at least two thirds of the participants.  Investigators concluded that the usefulness of the ugly duckling method in malignant melanoma skin cancer screening by general health care providers and lay persons “should be further assessed.”

Managing Pain Without Medication

In addition to medication for pain, there are other things we can do to reduce pain.  Usually these are used in addition to medicine or while waiting for the medicine to work.  But if a resident refuses pain medication, using these techniques may help.

Alternatives to Try

Distraction:  This is an effective technique.  It’s as though the brain can only pay attention to one thing at a time.  Talking, watching TV, playing games or looking at photo albums are some examples.  If the pain is severe, these will not work.

Deep breathing / relaxation exercises:  Guide the person in deep, slow, rhythmic breathing.  There are many relaxation recordings available that are easy to follow.  You can suggest to family members that they purchase relaxation recordings and furnish a listening device.

Cold:  A cold pack (gel pack, ice pack, or zip bag with crushed ice) helps inflammation or muscle ache.  Wrap the pack in a towel; do not put the ice pack directly on the skin.  Even if this does not relieve all pain, it may help to numb the area somewhat.

Warmth:  A warm tub bath or warm packs can relax muscles that have tightened due to pain.  A warm, wet washcloth applied directly to the affected area may help.  Covering the cloth with plastic will help retain the heat longer.

Massage: This is an excellent way to distract from pain and relax tense muscles that make the pain worse.  Lotion may reduce friction.  You do not have to massage the painful area.  Massaging another area of the body may distract the mind from pain.

Prayer / meditation: Some people find this very comforting and perceive less pain during prayer.  There may also be rites or rituals that could comfort the resident.  Ask family members about this.

Music: Music is another form of distraction that research has shown relieves pain.  It does not matter what kind of music, whatever the resident likes will work.  Again, family members can help provide information about musical tastes and recordings and a CD player.

Energy work / therapeutic touch: These are hands-on techniques in which the practitioner places his or her hands on the resident’s clothed body to achieve a transfer of energy.

Acupressure / acupuncture: These techniques apply pressure or needles to specific points on the body to relieve discomfort in other areas that are associated with those points.

Reflection / life review: Those nearing the end of life often want to reflect on the events of their lives and the people they knew.  Asking about family members or the resident’s youth or birth place may assist in starting this kind of life review.

Pets: Research shows that pets improve mood, lower blood pressure and heart rate, and may serve as a good distraction from pain.

Innovative Program at Pathways

Pathways Hospice patients can take advantage of our well developed Integrative Therapies program.  It provides innovative therapies such as guided imagery, comfort touch, music therapy, aromatherapy, massage, and pet therapy.  These therapies are shown to reduce agitation in residents.

If you are interested in learning more about the Integrative Therapies program at Pathways, talk to Pathways staff, or visit our website:  www.pathwayshealth.org.  The Resources section includes downloadable information and simple tips for incorporating Integrative Therapies in your daily life too!

Men, Women, and Pain

Rigorous research has concluded that men have a higher threshold for pain.  In a large-scale prospective study of 700 patients conducted by physicians from Tufts-New England Medical Center and San Ignacio Hospital, Bogata, Colombia, researchers examined post-surgical morphine use.  After adjusting for type of surgery and age, women had higher levels of pain intensity throughout the study than men, requiring an average of 30% more morphine on a per-weight basis than men to attain a similar decrease in pain intensity. 

Research results have been mixed, some finding that men required more morphine after surgery than women.  A very large Chinese study found women used significantly less morphine when using patient-controlled analgesia post-operatively, indicating that cultural, ethnic or genetic factors may account for differing research results.  But in animal models, male rats exhibited greater analgesia than female rats to equal doses of opioids.

The researchers wrote that, “Sex differences in pain perception have been attributed to a different socialization process for men and women that influences bodily experience and the willingness to communicate distress. Hormone variations could also in part explain sex differences in pain experience and response to morphine.”

Hindus & Hospice

Many Hindu beliefs align with hospice and palliative care goals.  A senior research specialist at the City of Hope in Duarte explored the Hindu concepts of suffering, karma and reincarnation in a recent article in the Journal of Hospice and Palliative Nursing.

Susan Thrane, MSN, RN, OCN, explained that among other similarities, Hindus often believe that death should neither be sought or prolonged, values that reflect the hospice philosophy.  However, they do sometimes believe that physical suffering is beneficial in that it can lead to spiritual growth, perhaps resulting in a better birth in a future life.

Although palliative and hospice care usually seeks to relieve pain and suffering, it also seeks to help individuals meet their personal goals, and sensitive to cultural beliefs.

Thrane found that Hindus tend to be family oriented, and may often defer health care decisions to the oldest son. 

There are an estimated 2.3 million Hindus in the US.

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.

Power of Positive Thinking

A series of lab experiments conducted in Europe found that those patients who expect their analgesics to work get relief from their pain.  Those who were told their painkillers had been discontinued had more pain, even though they were actually continuing to receive the same dose. A patient’s expectations about the effectiveness of a pain drug appear to override the properties of the drug itself.

Scans Illustrate Phenomenon

Patient MRI scans conducted during the research show that, “volunteers had more activity in areas of the brain involved in memory and anxiety when they were expecting pain versus when they were expecting relief.  When the volunteers were told the drug would work, there was a boost in brain activity in areas associated with fighting pain,” says study author Dr. Ulrike Bingel, from the department of neurology at the University of Hamburg Medical Center in Germany.

Although the placebo effect is well documented, there is less research on the “nocebo” effect, in which patients have negative experiences when warned about the side effects or lack of effectiveness of a treatment, even if they are taking a placebo.

“This tells me that when we’re talking to patients and presenting therapy, the more positive we are about how the therapy is going to impact them, the better outcomes we’re going to have,” says Carla Rubingh, a pain management specialist and assistant professor of pharmacy practice at the University of Nebraska Medical Center in Omaha who was not involved in the study. 

Benefits of the Mind-Body Connection

Pathways is home to an innovative Integrative Therapies Program that includes guided imagery and meditation to help patients find comfort and relief.  Relaxation techniques use the mind-body connection to achieve relaxation. Using simple suggestions, the practitioner guides the patient or family member to make the changes they wish to achieve in their physical or emotional state. This is very effective in reducing stress and anxiety, and is helpful in pain management.

For more information about Integrative Therapies at Pathways visit our website and Integrative Therapies resource page for caregivers. 

Cultural Sensitivity in Caregiving

One definition of culture:  "The constellation of values, norms and behavior guidelines that are shared by a group of individuals."  -Reflections on Nursing Leadership, 1st Qtr 2001

American medicine applies certain bio-ethical principles, such as autonomy and truth-telling, that can be at odds with the values of some of the many cultures found in the Bay Area.
 
These Western bio-ethical principles are based on Anglo-European values, which are also reflected in American law.  People from other cultures, whether caregivers, patients or families, may bristle when healthcare providers attempt to adhere to these values.

Withholding from patients information needed to make informed treatment decisions is illegal. Yet in many cultures telling patients negative information about their health condition is harmful to the patient.  Talking to the patient instead of the oldest child may also be seen as an infringement on the proper role of the family.
 
Distrust of the system

Significant distrust of the healthcare system exists.  In a group of culturally mixed elders in New York City researchers found: 

• Many equated less aggressive treatment with abandonment.
• Many thought having an advance directive was harmful, especially if it burdened one person.
• Most were reluctant to name anyone but a family member as a proxy or agent. 

Another example would be the African-American history of slavery and exploitation as test subjects.   African-Americans are half as likely as Anglos to opt for treatment to improve quality of life at the expense of length of life, even if pain will be constant. 

People that are poorer or socially disadvantaged expect to be denied care and often regard advance directives as legal devices of the health care system to deny care.  Some close-knit families feel that advance directives are destructive, and are incredulous on learning about laws that conflict with family decision-making.

One pattern seems to transcend almost all cultures: the elderly tend to have and prefer a passive voice in decision-making (e.g. “Doctors do the best they can”). 

Cultural multiplicity

In one culture illness may be seen as a test of faith and withdrawing treatment may be construed as interfering with God’s will, while in another using extraordinary treatments may be considered interfering with God’s will.

Pacific Island cultures may feel dying outside the home will leave the departed wandering without a place to rest while in another Asian culture, Chinese, death may be seen as a harbinger of more bad luck for the family of the deceased, so the patient may want to avoid dying at home. 

In many cultures, language and thought shape reality.  Talking about death must be avoided in places as diverse as Greece, China, Italy, Mexico, Korea, and countries in the Horn of Africa.

Can’t Know All Cultures

Clearly, we cannot know all cultures.  So how do we go about being culturally sensitive?  Proceed with caution.  Here are some things to bear in mind when working with a culturally diverse population:

• Not all members of a particular culture share the same beliefs.
• Find out how much the resident wants to know.
• Ask who the patient would like to be informed about health issues.
• Ask who to discuss treatments and outcomes with.

Above all, leave your cultural beliefs at the door when you go to work.  Deciding what the patient should or should not know is a form of paternalism.  It is also a distortion of the healthcare provider’s role as a patient advocate.

Consider taking a “values history.”  Find out:

• The patient’s perception of roles of caregivers and physician.
• The importance of self-sufficiency to patient.
• His or her attitude toward life (what brings enjoyment).
• What the patient fears most.
• What would be important to the person when dying?
• What is their religious background and belief system?

Although we want to avoid stereotyping, generalities can be useful: “I know that in some families of your culture we see [                   ].  Is this true in your family also?”

In a nutshell

Cultural sensitivity can be reduced to a few simple concepts:

• Leave your own cultural beliefs and biases at the door.
• Ask questions, then listen.  

Bio-Ethical Principles

• Autonomy: individual rights trump all
• Truth-telling: patients have a right to full disclosure
• Justice: resources should be equitably allocated.
• Confidentiality: Patients have a right to privacy
• Beneficence: act in the best interest of the patient
• Non-malfeasance: do no harm
• Responsibility: agree and adhere to regimen

At Pathways...

Early during the admission visit, the nurse asks the patient how much information about their health condition they would like to know, and whether they want to make their own healthcare decisions.

If they do not want to be the decision maker or know about their condition, we ask who they would like us to speak to.

If the patient does not speak and understand English very clearly, the nurse calls the AT&T language line and asks these questions via a translator. At subsequent visits a family member may translate.

Documenting this exchange meets the ethical principles of autonomy and truth-telling while respecting the patient’s cultural beliefs.