Managing pain is often a challenge for health professionals, but this challenge is compounded when the patient in pain is dying. Living in an ethnically and culturally diverse society requires healthcare providers to understand, respect, and take into account the particular cultures their patients come from. Providers 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 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 those diagnosed with cancer, degenerative neurologic diseases, painful neurologic diseases, and those diagnosed with a 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.
What is the function of learning appropriate pain management in the context of diverse cultural care? It is clear that 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 sub-specialty 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 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 with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at 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 simply the patient’s diagnosis.
In the ideal world, discussion of advance directives should take place with patients when they are not in crisis. The early introduction of palliative care specialists may help to clarify and document patients’ goals of care and pain/symptom management preferences. The palliative care teams can facilitate medical and nursing staff education about advance directives, palliative care, and end-of-life issues. Establishing baseline competence levels and protocols and policies to support the identification of patients’ goals of care will hopefully minimize unnecessary patient and staff suffering.
Barriers to Palliative Care Utilization
The number of US hospitals offering palliative care services has been growing rapidly for over a decade. This is in response to patient needs as well as healthcare and medical/nursing education reform. 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 US hospitals (more than 50 beds) reporting palliative care teams, an increase of 10% from the 53% of hospital 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.This burden is significantly higher in the Medicare population where 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 the acute, sub-acute and chronic illness setting. The HBPC team maintains a focus on management of pain and symptom issues through the course of the hospital admission. PC teams focus on strong communication with the patient/family, primary and specialty teams, and the interdisciplinary team.
The practitioner must be aware that in many cultures, it is considered inappropriate and culturally insensitive to discuss impending death. Healthcare providers should consider the beliefs of the family and patients before approaching individuals with a poor prognosis. While religion and spirituality have a tremendous influence on healthcare decision 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 family and patient beliefs can result in dysfunctional and potentially damage the patient-provider relationship. Further, lack of appreciating the patient and family’s beliefs can result in a significant barrier to appropriate pain management at the end of life. 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." Finding meaning in the suffering, therefore, is a healthy process that can make 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.
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 appropriate pain management and cultural sensitivity goes a long way toward providing a more functional environment and better patient and family care at this most sensitive time.
Cultural Pain Differences
The net effect of cultural differences in pain response often results in over or underestimated the severity of pain in some patient populations. In particular, a decreased pain expression may result in health practitioners assuming the absence of pain, resulting in the under-treatment of pain.
Cultural background influences how patients make pain and palliative care decisions. Some cultures place a strong value on the community, while others encourage individual independence. Some make family decisions, while others encourage each patient to make their own decision. Some cultures discuss pain and end-of-life decisions as a family, while others may leave the decision 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 behooves the health care practitioner to develop an understanding of the different influences that guide patient and family decisions.
Religious and cultural beliefs should guide health professionals in how, when, and, sometimes, even if patients pain should be treated. Unfortunately, many cultures do not accept or encourage the use opioids which are commonly used for pain relief. 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 narcotic use that should be dispelled.
Alternative Pain Management
Health practitioners should be aware of some alternative pain relief techniques that may be used safely in conjunction with narcotics. These include acupuncture, herbs, cupping, coining, and moxibustion. Sometimes the patients may request 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 prescription medications. Pharmacists and prescribers should collaborate to ensure the safety of alternative therapies, especially when combined with prescribed prescription medications.
One method to improve pain manage and palliative care is to involve patients and families in decisions regarding care and the care of patients. 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 may be 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. The range of care provided by families may include personal hygiene or be limited to assisting with eating and basic functions. If possible, health professionals should be willing to accommodate the wishes and desires of the family and patients in the care of patients while maintaining their dignity and independence as long as possible.
One of the difficult challenges of palliative care is when the patient communicates in a different language. 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 mention 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 both in inadequate pain assessment and treatment because the provider cannot communicate the treatment risks and benefits. If the patient's English skills are limited, the patient should be offered an interpreter. 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, in fact, 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. If possible, health professionals should make every effort to accommodate religious and spiritual practices at the end of life. Medical providers can better address religious and spiritual needs in dying if they have more knowledge regarding the disease process while including the mental and physical needs of the patient.
Summary of Pain and End-Of-Life Issues by Culture
Although the following descriptions of various cultures may be generally true, 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.
East Asian Culture
East Indian Culture
Gypsy Roma Culture
Native American Culture
Native Hawaiian Culture
South African Culture
Appropriate education of health professionals can increase appropriate use of pain medicine and palliative care. Health professionals can help patients and families dispel fears about opioid medications by explaining the appropriate use of narcotic 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 education.
Unfortunately, disparities in culturally diverse populations occur, particularly in the management of a patient’s pain at the end-of-life. Palliative care, in particular, has been shown to be underutilized by culturally diverse populations. 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 patients at the end-of-life. It is important 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, involve the immediate family. If there is a language barrier, a trained medical interpreter should be used.
By educating health practitioners about appropriate pain management and the cultural issues concerning pain and death, better care can be provided.
Questions for the Patient
The patient should be educated on nonpharmacologic and pharmacologic 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 important to avoid.
The patient should also be instructed on pain assessment tools. Make sure while the patient is completely 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 a duty 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 all cultural backgrounds. As Rachel Naomi Remen MD 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.”
Pain Assessment Tools
Culturally sensitive pain assessment is important 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, it 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 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. In order for this scale to be effective, 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 patients 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. The health professional should evaluate the patient's cultural beliefs surrounding pain treatment to assess whether additional pain medicine may be necessary.