According to the Institute of Medicine, “a good death” is one that is “free from avoidable distress and suffering for patient, family, and caregivers, in general accord with the patient’s and family’s wishes, and reasonably consistent with clinical, cultural, and ethical standards (Gustafson, 2007).” No one wants to see their loved one suffering during their end stages of life. It is important to educate those in the medical field as well as caregivers on the importance of pain medication being administered appropriately to avoid a miserable death. With the proper education materials and tools, Hospice patients will not die a miserable death, but “a good death.”
Pain is defined as “an unpleasant sensory and emotional experience that is associated with actual or potential tissue damage or described in such terms (Gebhart, 2000).” A key aspect of this definition is that it goes on to say, “pain is always subjective (Gebhart, 2000).” Pain has been considered a “5th vital sign” but there is no clinical guideline stating that it is. Pain is a symptom, not a vital sign such as blood pressure, heart rate, respiratory rate, and temperature that can be measured objectively (Fiore, 2016). Pain management is defined as the process of providing medical care that alleviates or reduces pain (Definition of Pain management, 2018).
Hospice is a term given to specialized care that is intended to provide comfort and support to patients and their families when illness no longer responds to treatment and death is inevitable (Goldstein & Glaser, n.d.). Hospice in the US is largely a home-based service, and most care is provided in patients’ homes by an informal, unpaid caregiver, often a family member of the dying patient. Nearly 70% of hospice deaths occur in the patient’s home (Oliver, et al., 2013). One of the main goals of hospice care is pain control. Federal guidelines and state laws require that hospice assess all their patients for pain and maintain the control of their pain. An Institute of Medicine report suggests that 40% of those at the end of life have severe, unrelieved pain (Oliver, et al., 2013).
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America is in the midst of an opioid epidemic characterized by aggressive prescribing practices, highly prevalent opioid misuse, and rising rates of prescription and illicit opioid overdose-related deaths. Overall, approximately 4% of US adults consume opioids regularly for pain (Clark & Schumacher, n.d.). Due to the opioid epidemic, pain management has become a negative stigma for some nurses. Although pain is supposed to be subjective, some nurses have become numb to a patients expression of pain. Some patients have the inability to express pain; therefore a tool has been created to utilize pain. Figure 1 is a FLACC pain tool used by Serenity Hospice Care of Dublin, Ga.
As a patient is dying, caregivers are faced with the dilemma of keeping their loved one pain free. The majority are afraid that if they administer what is prescribed, they will cause their family member to die. Despite lack of training, informal caregivers must assess the severity of pain, and make choices about how to administer medication to treat it.
Hospice patients have complicated medication schedules, particularly regarding administration of opioids. It is a challenge for the caregiver to assess pain and bring into play “extra” opioid pain relief “as needed” for “breakthrough pain” (Oliver, et al., 2013). The American Society for Pain Management Nursing (ASPMN) and Hospice and Palliative Nurses Association (HPNA) hold the position that nurses and other health care providers must advocate for effective, efficient, and safe pain and symptom management to alleviate suffering for every patient receiving end-of-life care regardless of their age, diseases, history of substance misuse, or site of care.
This position statement is directed to the special needs of those individuals with a serious illness and a prognosis of days to months (Coyne, Mulvenon & Paice, 2018). It is the nurse’s job to educate the family on how to assess the pain and when to administer the medication. With pain assessment tools, such as the FLACC tool, family members can determine when to administer the medication.
With the conscious use of basic ethical principles, nurses should be able to see their own biases clearly and make evidence-based decisions that provide optimal pain treatment for every patient. Referring to ethical principles may also help the nurse advocate for the patient’s pain relief needs when talking to physicians who may also have their own biases in pain treatment (Bernhofer, 2011). Despite how nurses and doctors feel about the use of opioids and pain, the ultimate goal is to ensure that the patient’s pain is controlled. With nurses and doctors making unbiased, ethical decisions, the patients and families will trust more easily and have greater satisfaction out of the care given.
Given by the nurse manager, mandatory in-services over pain medication should be required of nursing staff on initial hire and monthly. If a member of the nursing staff is not checked off on the monthly in-service, he/she will not be able to work until it is completed. A notebook will be required of each staff member to keep this information with them at all times after completion. On admission day of the hospice patient, the nurse should be able to go out into the home and educate the family on the importance of pain relief and how to assess the family member for any signs and symptoms of pain. If pain is unrelieved, the nurse or doctor should be contacted to re-evaluate the treatment plan for the patient. Once a decision has been made, if the pharmacy cannot deliver within a reasonable amount of time, Hospice staff should be required to pick the medicine up and take it to the patient’s home.
When the inevitable occurs, a survey will be sent to each caregiver’s home to see the overall satisfaction of pain management. Each survey will be used for quality improvement to the pain management policy. With a dissatisfaction to satisfaction scale (0-10), the organization will be able to tell if their policy is effective or not.
With mandatory in-services and required education material to be with staff at all times, an overall improvement in pain management should be seen. Satisfaction and trust will be gained from the Hospice patient and caregivers, with improved communication and open-mindedness. No one person perceives pain as the other. Every person should be allowed to die “a good death.”
