Continuing Education Activity

Managing pain is often a challenge for health professionals. This is compounded when the patient in pain is dying. Living in an ethnically and culturally diverse society requires healthcare providers to respect and take into account the particular cultures from which their patients come. Health professionals and teams who learn the nuances of culture are rewarded with the knowledge they have been more effective in managing their patients' pain. Also, they are better able to help the family and friends of their patients adjust to the dying process. Keeping in mind the beliefs, experiences, and values of the patients and their families improves the quality of the medical care provided. Pain is perceived by the patient and can only be reported by the patient. Pain is, therefore subjective, and, depending on the verbal skills of the patient, can be difficult to describe. Putting pain into words requires a degree of self-awareness and is colored by the cultural background of the patient. Pain is a common symptom of many diseases and is often experienced at the end of life. Studies have shown as much as half of those dying experience moderate to severe pain in the final months of life. For the health practitioner, this highlights the importance of frequent pain assessment, pain management, and adjustment of pain medications. Palliative care relieves suffering in patients with life-threatening illnesses and maximizes their quality of life. Palliative care may be necessary for those diagnosed with cancer, degenerative neurologic diseases, painful neurologic diseases, and those diagnosed with chronic obstructive pulmonary disease to relieve symptoms of breathlessness. Hospice or end-of-life palliative care is often provided to dying patients, particularly during the final months of life. This activity reviews the evaluation of pain and palliative care in a culturally sensitive manner. It highlights the role of the interprofessional team in the management of pain and palliation in this setting.

Objectives:

• Identify some cultural pain perceptions.
• Review cultural barriers to palliative care.
• Describe cultural pain differences.
• Outline how the interprofessional team can work with the patient and family to provide pain relief in the setting of palliative care.

Introduction

Managing pain is often a challenge for health professionals, but this challenge is compounded when the patient in pain is dying.[1] Practicing in an ethnically and culturally diverse society requires healthcare providers to understand, respect, and take into account the particular cultures from which their patients come.[2] Health professionals who learn the nuances of culture rewarded with the knowledge they have are more effective in managing the pain of their patients. Also, they are better able to help the family and friends of their patients adjust to the dying process. Keeping in mind the beliefs, experiences, and values of the patients and their families improves the quality of patient care.[3]

Pain is perceived by the patient and can only be reported by the patient. Pain is, therefore, subjective and, depending on the verbal skills of the patient, can be challenging to describe. Putting pain into words requires a degree of self-awareness and is colored by the cultural background of the patient. Pain is a common symptom of many diseases and is often experienced at the end of life. Studies have shown as much as half of those dying experience moderate to severe pain in the final months of life. For the health practitioner, this highlights the importance of frequent pain assessment, pain management, and adjustment of pain medications.

Palliative care, focusing on symptom control and comfort measures, relieves suffering in patients with life-threatening illnesses and maximizes their quality of life. Palliative care may be necessary for patients diagnosed with cancer, degenerative neurologic diseases, painful neurologic diseases, and those diagnosed with chronic obstructive pulmonary disease to relieve symptoms of breathlessness. Hospice or end-of-life palliative care is often provided to dying patients, particularly during the final months of life.

Function

What is the function of learning appropriate pain management in the context of diverse cultural care? Cultural beliefs regarding pain and death influence the patient and family’s preferences for palliative care. While there have been variations in defining “palliative care,” the Center to Advance Palliative Care (CAPC) offers the most structured definition: “Palliative care, and the medical subspecialty of palliative medicine is specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family. Palliative care is provided by a team of palliative care doctors, nurses, social workers, and others who work together [4] with a patient’s other doctors to provide an extra layer of support.[5] It is appropriate at any age and any stage in a serious illness and can be provided along with curative treatment.” Palliative care aims to treat holistically, taking into consideration factors beyond merely the patient’s diagnosis.[6]

Quality-of-Care Issues 

In the ideal world, discussion of advance directives should take place with the patients when they are not in crisis. The early introduction of palliative care may help clarify the patient’s goals of care and pain/symptom management preferences.[7] The palliative care teams can facilitate medical and nursing staff education about advance directives, palliative care, and end-of-life issues. [8] Establishing baseline competency levels and protocols and policies to support the patient’s goals of care will help minimize unnecessary patient and staff suffering.

Barriers to Palliative Care Utilization[9][10][11]

1. The lack of resources
2. The lack of knowledge about existing resources, or the provider’s reluctance to refer
3. Misunderstandings of the scope and value of palliative care
4. Provider bias, which includes a reluctance to refer
5. Patient or family barriers created by the reluctance
6. Restrictive specialist palliative care service program eligibility criteria

The number of U.S. hospitals offering palliative care services has been proliferating for over a decade.[5] This is in response to patient needs as well as healthcare and medical/nursing education reforms.[12] While there has been a national trend indicating growth, the Center to Advance Palliative Care’s (CAPC) 2015 state-by-state report card grades the nation at a grade of B. 

The 2015 report card shows an increase in the number of hospital palliative care teams in the United States, with 67% of U.S. hospitals (more than 50 beds) reporting palliative care teams, an increase of 10% from 53% of hospitals reporting the same in 2008.

The Aging Population

Greater than one-third of Medicare patients with advanced chronic illness experience four transitions in care during their last year of life. The majority of deaths are attributable to common diagnoses: congestive heart failure, chronic lung disease, cancer, coronary artery disease, renal failure, peripheral vascular disease, diabetes, chronic liver disease, and dementia. Their disease trajectory is chronic and progressive in the setting of advancing disease, which is incurable and will eventually reach a point of maximal medical therapies with little to no benefit and continued failure. Palliative care teams provide consultation services to help manage complicated patients in acute, sub-acute, and chronic illness settings. They focus on strong communication with the patient/family, primary and specialty teams, and the interprofessional team.

Cultural Considerations

The practitioner must be aware that it is considered inappropriate and culturally insensitive to discuss impending death in many cultures. Healthcare providers should consider the beliefs of the family and patients before approaching individuals with poor prognoses. While religion and spirituality have a tremendous influence on healthcare decisions made by patients, many health professionals may not consider this factor or the functional impact it may have on the evaluation and treatment of pain and palliative care.

Lack of understanding of the beliefs of patients and families can potentially damage the patient-provider relationship.[1][13] Further, this lack of trust can also act as a significant barrier to appropriate pain management. At the end of life, people from a wide spectrum of cultural and religious backgrounds tend to think over their lives and take a spiritual inventory. Dame Cecily Saunders, the founder of the modern-day hospice movement, understood how unresolved emotional and spiritual issues amplify the pain of dying. She called this spiritual pain and said that it came from “a desolate feeling of meaninglessness.” Therefore, finding meaning in the suffering is a healthy process that can make the pain and other uncomfortable symptoms more manageable. Dying patients are often asking themselves, “Was my life worthwhile? Did I have an impact?”

Many cultures also have distinct cultural beliefs regarding the meaning, origin, and role of pain, which can affect how a patient interprets and perceives pain.[14]

• African, Asian, Chinese, East Indian, Hispanic, Indonesian, Japanese, Native American, and Vietnamese families may request providers not to disclose a terminal diagnosis as they want to avoid emotional suffering and preserve hope.
• For Christian Scientists, Hinduism, Jehovah’s Witnesses, Mormons, Muslims, and Seventh-day Adventists, it is considered contrary to the church’s teachings to euthanasia and possible use of drugs that may hasten death.
• Members of the Buddha religion may not want any drugs that cloud the mind near death.
• Taiwanese may believe that bad luck occurs if one discusses impending death out loud and, as a result, avoid discussing death to tempt fate. 

Practitioners often describe a family’s reluctance to discuss palliative issues with patients as a barrier to appropriately managing pain in a dying patient. Further, health practitioners may misinterpret an unwillingness to discuss impending death as a refusal of appropriate pain management. Learning both proper pain management and cultural sensitivity goes a long way towards providing a more functional environment and better patient and family care at this most sensitive time.

Cultural Pain Differences 

• Chinese people may believe pain results from an imbalance between yin and yang.
• Some cultures believe they should endure pain bravely and serve as a role model, perhaps to improve their standing in life after death.[15]
• Some cultures may believe pain may be a sign of progress toward recovery.
• Some cultures, such as American Indian, Asian, Black, Hispanic, are very stoic regarding pain and may maintain a neutral facial expression despite being in severe pain.
• Some religions may believe pain is a part of God’s plan, a test of faith, or penance for past sins.

The net effect of cultural differences in pain response often results in over or underestimation of the severity of pain in some patient populations. In particular, a decreased pain expression by a patient may be viewed as an absence of pain by health professionals, resulting in the under-treatment of pain.

Issues of Concern

Cultural background influences how patients make pain and palliative care decisions. Some cultures place a substantial value on the community, while others encourage individual independence. Some let the family make decisions, while others help each patient to make their own decision. Some cultures discuss pain and end-of-life decisions as a family, while others may leave the choice to the patient and possibly a spouse. In some cultures, the decisions regarding the care of the elderly are left to the children. Many countries are a melting pot of different cultures, and it becomes necessary for the health care practitioner to develop an understanding of the various influences that guide patient and family decisions.

Pain Management

Religious and cultural beliefs should guide health professionals in how, when, and, sometimes, even if a patient’s pain should be treated. Unfortunately, many cultures do not accept or encourage the use of opioids, which are commonly used for pain relief.[16] This becomes a challenging barrier because opioids are often the primary pharmacologic treatment for palliative care of those in severe pain nearing the end of life.

There are many beliefs and myths regarding opioid use that should be dispelled.[17]

• Many patients and families believe that the use of opioid pain medication is the equivalent of euthanasia. Several studies have shown that opioids may prolong survival. Opioids in the context of severe pain also allow the patient to communicate with family and be considerably more comfortable.
• Patients may also falsely believe that the use of opioids means death is imminent.
• Patients may believe that the administration of opioids early in the development of pain will decrease options for treatment in the future. The family and patient should be educated that opioids have no maximum dosage and can be increased as needed to provide pain relief.
• Patients may refuse opioids due to fear of addiction. Given that the patient has a terminal illness, this is a false fear.

Alternative Pain Management

Health practitioners should be aware of some alternative pain relief techniques that may be used safely in conjunction with opioids. These include acupuncture, herbs, cupping, coining, and moxibustion. Sometimes the patients may request the use of a spiritual healer that may use medicinal herbs. Whenever possible, health professionals should allow traditional remedies for pain palliation, providing they are not harmful to the patient. The provider should evaluate the herb to make sure it does not contain an active ingredient that will interact with the prescription medications. Pharmacists and prescribers should collaborate to ensure the safety of alternative therapies, especially when combined with prescription medications.

Family Involvement

One method to improve pain management and implement palliative care is to involve patients and families in decision-making processes regarding patient care. Many families want to be involved in daily care activities. Health professionals should allow this request as long as it does not place the patient at undue risk. Risk can be mitigated by instructing family members how to bathe, position, and assist in transfers. Some families are so involved that they provide all the care, and health professionals’ involvement is limited to medication administration. Involving the family may increase the acceptability of palliative care.[18] If possible, health professionals should be willing to accommodate the wishes and desires of the family and patients while maintaining their dignity and independence as much as possible.

Language Barriers

One of the difficult challenges of palliative care is when the patient communicates in a different language.[19] The concepts may have different meanings when translated, and poor decision making ensues. Using a family member as a translator is convenient but may result in miscommunications. For instance, a family member from a culture that avoids discussing death would be reluctant to translate the words from a patient’s doctor, which mentions death. Using a professional translator is always preferred for sensitive discussions. Sometimes this needs to be arranged by phone. 

The patient may be experiencing significant pain, and yet, due to misinterpretation, the level of pain may not be understood, resulting in under-treatment. Language barriers often result in inadequate pain assessment and treatment because the provider cannot communicate the treatment risks and benefits. If a patient’s English skills are limited, an interpreter should be arranged. The use of professional interpreters will decrease communication errors, improve clinical outcomes, and increase patient satisfaction.

Communication and Accommodation

Many patients and families may be reluctant to discuss religious and cultural issues affecting their care. They may consider it inappropriate to ask for pain medications and assume the provider would suggest it if it were an option. Patients may rely on the health professional to bring up pain treatment options. Further, requesting pain medicine may be considered a sign of weakness, particularly in some cultures that believe pain is part of the dying process and must be accepted and tolerated without complaint. In addition to pain, patients near the end of life often have spiritual needs. Many patients will rely on prayer to ease and treat pain. As a result, health professionals must be aware of the cultural and religious customs and rituals near death.[20] If possible, health professionals should make every effort to accommodate religious and spiritual practices at the end of life. 

Summary of Pain and End-Of-Life issues by Culture

Although the following descriptions of various cultures may be generally correct, individual patients may differ, depending on personal history, family background, and education. Also, there may be gender differences within cultures. Communication with each patient and their family is crucial in understanding issues of cultural importance. “Two people, with the same faith tradition and cultural upbringing, may have different end-of-life issues that create pain, challenge, or distress. This may be because of the choices made in their lives and/or the circumstances that surround them.” (Spiritual Care in a multi-religious context. Lunn JS, Journal of Pain & Palliative Care Pharmacotherapy, 2003)

Also, even when a patient is from a culture that avoids discussing death, difficult topics can often be broached in the context of a caring therapeutic relationship with a trusted medical practitioner.

African-American Culture

• Death: Tend to display grief openly. Family and relatives usually present.
• Pain: May avoid the use of pain medicine due to fear of addiction. Pain scales are often helpful.
• Palliative care: Generally accepting of end-of-life care if educated on appropriate forms of pain management.

Amish Culture

• Death: Death carries a great deal of spiritual meaning.
• Pain: Very high pain tolerance.
• Palliative care: May accept palliative care.

Arab Culture[21][22]

• Death: May avoid discussions of impending death.
• Pain: Very expressive
• Palliative care: Usually not willing to accept Do Not Resuscitate (DNR) orders. 

Cuban Culture[23]

• Death: Everything possible should be done.
• Pain: Maybe stoic regarding pain and thus reluctant to accept pain medication
• Palliative care: May be reluctant to accept palliative care.

East Asian Culture[15]

• Death: Reluctant to talk about death.
• Pain: May be stoic; look for non-verbal signs.
• Palliative care: May believe dying at home may bring bad luck. Will accept palliative care.

East Indian Culture

• Death: Death should be discussed with family first, who may not inform the patients.
• Pain: Will accept pain medicine for severe pain.
• Palliative care: May accept palliative care.

Filipino Culture

• Death: A loud grieving process is typical. May avoid discussing.
• Pain: Often expressed as “cold” or “hot.”
• Palliative care: Will accept palliative care and pain control.

Egyptian Culture

• Death: Avoid discussions of death.
• Pain: Will accept pain medications but require being alert near death.
• Palliative care: May accept care but no euthanasia.

Iranian Culture

• Death: Avoid discussions with the patient.
• Pain: Tend to express pain loudly
• Palliative care: May accept pain medications

Jamaican Culture

• Death: Maybe very emotional with crying and mourning typically
• Pain: Highly variable
• Palliative: Will seek health care but may believe in a possible cure despite terminal illness. Generally, accept end-of-life care.

Japanese Culture

• Death: May avoid discussion
• Pain: Maybe very stoic
• Palliative: May take assistance, often at home

Ghanaian Culture

• Death: Telling a patient they are going to die is unacceptable. More culturally acceptable to say, “It is time to put your home in order.”
• Pain: Often described as emotional or spiritual.
• Palliative care: Usually, they prefer to die at home with little or no medical assistance.

Haitian Culture

• Death: Maybe very vocal regarding pain
• Pain: Acceptable of pain medicine.
• Palliative care: Usually, they die at home.

Hispanic Culture[23]

• Death: A large number of family members may be present. The family may not want to inform the patient of the end-stage of a terminal illness.
• Pain: May not complain of pain and may only provide nonverbal clues.
• Palliative care: May have reservations regarding accepting end-of-life care.

Indonesian Culture

• Death: Grief may be filled with emotion.
• Pain: May request no pain medicine near death.
• Palliative care: Commonly wish to die at home.

Kenyan Culture

• Death: Generally, desire life to be preserved at all costs. 
• Pain: Usually, they avoid pain medicine.
• Palliative care: Commonly wish to die at home.

Korean Culture

• Death: Mourning and crying.
• Death: Maybe stoic. May accept pain medicine as well as herbal medicines.
• Palliative care: Usually, they prefer to die at home.

Libyan Culture

• Death: Tend to be very emotional.
• Pain: May accept pain medicine up until nearing death when they prefer to be alert.
• Palliative care: May accept palliative care.

Native American Culture

• Death: May avoid contact with dying. Verbal grieving may include wailing.
• Pain: Maybe under-treated and only expressed privately to family or friends.
• Palliative care: May not be willing to discuss terminal status as it is thought to hasten death.

Native Hawaiian Culture

• Death: Tend to celebrate life rather than death.
• Pain: May only accept treatment for severe pain. Nonverbal cues may be the only way to appreciate pain levels.
• Palliative care: May prefer to have family present when discussing an unfavorable prognosis. Accepting of palliative care.

Roma Culture

• Death: May involve wailing and calling out to God.
• Pain: Accepting of pain medicine.
• Palliative care: May not be accepting of institutional care.

South African Culture

• Death: Avoid the discussion as they believe talking about it will make it happen.
• Pain: accept pain medicine.
• Palliative care: Usually, die at home with limited involvement of health professionals.

Vietnamese

• Death: Will have a difficult time discussing death and DNR. These subjects stir deep emotions.
• Pain: Maybe very stoic. 
• Palliative care: Will probably accept palliative care and pain medicine.

Clinical Significance

The education of health professionals can increase the appropriate use of pain medicine and palliative care. Health professionals can help patients and families dispel fears about opioid medications by explaining the proper use of opioid pain medicine. Patients need to be taught that pain relief will decrease psychological and physical stress, possibly prolong life, and allow a more comfortable dying process. Patient education improves satisfaction with pain and palliative care management. Patient adherence to pain treatment regimens is improved with knowledge.

Disparities in culturally diverse populations occur, particularly in the management of a patient’s pain at the end-of-life. Palliative care, in particular, is underutilized by culturally diverse communities. Studies show that non-white patients are substantially less likely to receive end-of-life care and appropriate pain management.

Health practitioners should be aware that many different cultural beliefs can be relevant to the care of patients at the end-of-life. It is crucial for the health practitioner to feel comfortable in asking the patient about their personal preferences regarding pain management and end-of-life care. The discussion should take place with the patient and, if desired, with the immediate family. If there is a language barrier, a trained medical interpreter should be used.

By educating health practitioners about pain management and the cultural issues concerning pain and death, better care can be provided.

Questions for the Patient

1. How important is staying mentally alert to you in the final days before death?
2. What pain level are you willing to endure?
3. What type of pain medicine or alternatives should be considered?

The patient should be educated on nonpharmacological and pharmacological pain options. The patient should understand that while opioids will ease suffering and pain, they may also cause a certain amount of clouding of the mind, which some cultures feel it is essential to avoid.

The patient should also be instructed on pain assessment tools. Make sure while the patient is entirely coherent, they understand how to use them. The health practitioner must also learn to interpret pain scores considering the patient’s cultural beliefs.

Members of the healthcare team should work with the patient’s spiritual advisor to help the patient make peace with their impending death. The medical staff should make every effort to accommodate requests for space and time for praying.

Healthcare clinicians and support staff should always be aware of the cultural backgrounds of their patients. Providers require an understanding of how to communicate with patients about end-of-life decisions. Many clinicians have a difficult time talking to terminally ill patients when death is imminent. This is a skill that can be learned. In time and with training, healthcare providers can manage pain appropriately while simultaneously providing culturally sensitive end-of-life care.

Healthcare providers have to care for patients with compassion, especially during their final moments. Improving cultural competence ensures that health professionals can provide pain relief and optimal palliative care to patients from all walks of life and cultural backgrounds. As Rachel Naomi Remen, M.D. once said: “Our power to heal is far less limited than our power to cure. Healing is not a relationship between an expert and a problem. It is a relationship between human beings.”

Other Issues

Pain Assessment Tools

Culturally sensitive pain assessment is essential to achieve proper pain control. The following are pain evaluation scales that can be used in culturally diverse populations.

Faces Pain Scale

Perhaps the simplest scale is composed of a series of faces that progress from a neutral facial expression indicating no pain to a grimacing expression suggesting severe pain. The patient selects the face that corresponds to their pain intensity. The scale works particularly well in children but may also be used in adults, particularly those with impaired cognition.

Numeric Pain Rating Scale

A vertical line with marks evenly spaced and numbered from zero to 10. The patient circles or verbalizes the number corresponding to their pain intensity. Health professionals need to ensure patients understand how to use the scale. Some patients that fail to understand the use of the scale may choose lucky or sacred numbers.

Visual Analog Scale

A 10-cm horizontal line with the worst possible pain on the right end and no pain at the left. The patient makes a line to indicate their pain level. The clinician measures from the left end to the patient's mark from 0 to 100 in millimeters to obtain a pain score. For this scale to be practical, the patient must have motor skills to utilize a marking pen. This system may not work well for patients with impaired cognition. Measuring the location of the marks may add a potential source of error in calculating the pain score. This scale may also be culturally inappropriate for Chinese and Japanese patients as they are used to reading vertically instead of horizontally.

Pain Scale Interpretation

Health professionals should incorporate cultural values when evaluating pain scores. A patient's facial expressions may show they are in severe pain, yet they may report a low pain score because it is part of their cultural belief that pain should be endured. Recognizing this may help them assess the need for additional pain medications.

Enhancing Healthcare Team Outcomes

End-of-life care carries much meaning to both healthcare professionals and patients/families. Involving an entire interprofessional team of healthcare professionals is more critical in this area than perhaps any other area. Because every healthcare worker can not know every aspect of every culture, asking the right questions to the patients and family members and involving other team members is critically important. The healthcare team should include primary care, oncology, palliative care, pharmacists, and hospice nurses to ensure the best outcomes. [Level 5]