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.

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.