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.