Strategies to Assist Family Caregivers Treating Pain and Suffering at the End of Life
QUICK LOOK AT THE CHAPTER AHEAD
Individuals near death are at risk for symptoms of distress such as pain, dyspnea, agitation, nausea and vomiting. Efforts to identify and effectively treat these symptoms are essential if suffering near death is to be prevented. When clients are at home, family caregivers are expected to recognize and treat these symptoms. Though they are not professional health providers, research has shown that family caregivers are able to manage symptoms near death, with the appropriate information and ongoing clinical support from experts in palliative care.
TERMS
□ antiemetic
□ ABH (Ativan/Benadryl/Haldol)
□ buccal mucosa
□ compounded
□ delirium
□ diphenhydramine
□ dyspnea
□ haloperidol
□ lorazepam
□ prochlorperazine
□ per rectum (PR)
□ symptom relief kit
□ terminal agitation
CASE STUDY
M. B. is a 40-year-old woman with advanced lung cancer whose tumor has not responded to recent chemotherapy and whose overall condition is declining. When told of her condition, she requests to go home to die. A referral to home hospice is made. The hospice nurse makes the first home visit on a Friday afternoon at 4:00 PM. The nurse finds M. B. to be extremely lethargic with cool, clammy skin, all of which are manifestations of physiologic changes that occur in the last hours and days of life. M. B. is awake enough to answer simple questions and admits to pain and nausea. She is moaning at rest, and she grimaces with movement. At the start of the visit, M. B.’s mother is the only person in the house. She tells the nurse that she gave 2 tablets oxycodone/acetaminophen (Percocet) to her daughter for pain. The mother states she is able to identify all of her medications, including the prochlorperazine (Compazine) suppositories ordered for nausea and the morphine sulfate elixir (20 mg/mL) ordered for pain or shortness of breath (dyspnea).
M. B.’s husband enters the room but stands in the back, away from the client and the nurse. He has tears in his eyes and appears stunned. The nurse tells M. B’s mother and husband that M. B. should not have pain, moaning, grimacing, or nausea. The nurse suggests that she administer an antiemetic suppository per rectum (PR) for the nausea, and morphine sulfate elixir by mouth for pain. With the approval of the family, the nurse administers a 25 mg suppository of prochlorperazine and 0.5 mL of a 20mg/mL (10 mg) of morphine sulfate elixir orally. Within 25 minutes, M. B. states her nausea has improved and her pain is gone, and she no longer has moaning at rest. Recognizing that M. B. will require symptom management after she leaves, the hospice nurse offers to develop a medication plan to prevent recurrent pain and nausea and to plan for treatment of other symptoms that could occur. M. B.’s mother collaborates in the plan but states that she will only be available during the day. M. B.’s husband admits he’ll be in the home when
his mother-in-law leaves, listens to the nurse’s recommendations for medication, but says, “I don’t think I can do this.”
his mother-in-law leaves, listens to the nurse’s recommendations for medication, but says, “I don’t think I can do this.”
What should the nurse do about Mr. B’s perceived inability to administer medications? Identify two priority symptoms (other than pain and nausea) for which the hospice nurse would assess M. B. How does the nurse instruct family caregivers to assess M. B. for pain? How will the nurse evaluate the effectiveness of the medication management plan? What is one strategy that home hospice nurses can use to assist family caregivers with medication management of commonly occurring symptoms?
FAMILY CAREGIVERSWith the shift in healthcare delivery from the hospital to the home and the availability of home hospice services, more clients are being cared for in the home near the end of life. Although home hospice nurses casemanage the care of clients, time spent by the nurse in the home is limited by third-party payment systems. The hospice nurse performs assessments on clients and family and collaborates with the patient, family, and hospice team to develop a plan of care to manage symptoms of distress. Symptoms present when the nurse is in the home, are often treated by the nurse. But it is the role of family caregivers to continue with the plan of care (that is, give medications) and to treat recurrent symptoms of distress.
Treating symptoms of distress requires family caregivers to recognize symptoms, identify the appropriate treatment, and administer the medication by oral, sublingual, transdermal, rectal, or intravenous route. Any one component of this process can be unfamiliar and anxiety-provoking to a lay person. And symptoms of decline that often occur near death add to the complexity of the process and the anxiety of the caregiver.
Families vary in how they organize and provide care. However, most have one person who assumes the role. Because the role involves a 24-hour-a-day commitment, others will need to assist. The majority of primary caregivers in the home have traditionally been women. The trend, however, is that males are increasingly taking on the caregiver role.
Skills to make decisions about management of symptoms are not inherent in lay caregivers. Although instructions on symptom management can be taught, lay caregivers lack the clinical judgment that healthcare professionals have acquired through education and experience to assess and treat symptoms of distress. Lay caregivers may not recognize symptoms of distress or, if able to identify symptoms, they may be reluctant to give medication to treat symptoms. Reluctance to give medication can occur for a variety of reasons. Studies have shown that caregivers have difficulty making decisions about the management of pain in clients in the home both before the terminal phase and near the client’s death. Difficulties arise when clients can no longer verbally report their symptoms or collaborate on decisions to treat; when caregivers perceive that the
client would prefer to defer taking treatment for a symptom; and when family members object to treatment of a symptom, administration of a certain medication such as morphine, or the use of a particular route such as the rectal route. Another barrier to caregiver treatment of symptoms is fear of overdosing or harming the client.
client would prefer to defer taking treatment for a symptom; and when family members object to treatment of a symptom, administration of a certain medication such as morphine, or the use of a particular route such as the rectal route. Another barrier to caregiver treatment of symptoms is fear of overdosing or harming the client.
Whereas some factors act as barriers to treatment of symptoms, other factors can facilitate caregiver treatment. Factors that facilitate treatment work by prompting the caregivers to administer a medication. Facilitating factors include receiving information on management of symptoms from a home hospice provider; instruction regarding which symptoms are more likely to occur (related to the disease and to past client experiences); ongoing interaction with the nurse and reliance on the hospice nurse’s judgment; the ability of the client to verify presence of a symptom; past experience observing a specific symptom; recognition of client behavior associated with a symptom (for example, reaching for emesis basin when nauseated); and perception that the symptom indicates suffering.
It is important to note that influences on caregiver decisions to treat symptoms near death will vary in their effect among caregivers and as situations and circumstances change. It is not the simple presence or absence of a factor that will predict caregiver decisions to treat: it is the effect that a factor has on a caregiver at a certain point in time. Though knowledge of potential influences on management of symptoms is helpful in identifying potential caregiver difficulties and strengths, this knowledge is limited by its relation to the particular context of the situation and by its interaction with other influencing factors.
Pain and Symptoms of Distress at the End of Life
Most of what is known about the occurrence and treatment of symptoms near death has come from studies of clients with terminal cancer. Research has identified up to 44 symptoms known to occur near death, with pain, dyspnea, delirium, nausea, and vomiting considered the most distressing for clients to endure. Although the distinction for pain is generally made, symptoms such as dyspnea and delirium can cause suffering that is equal to or greater than some types of pain. It is therefore important that these other symptoms be included in discussions with family caregivers in the home.
Like pain, dyspnea, delirium, nausea, and vomiting can intensify, decrease, or remain the same near death. Often, these symptoms need to
be treated aggressively to prevent their escalation. Effective management and control of symptoms near death can be achieved most of the time with standard medications, when the client has access to experts in palliative care. Even with optimal care, a small percentage of clients will likely have intractable symptoms that may require sedation until death.
be treated aggressively to prevent their escalation. Effective management and control of symptoms near death can be achieved most of the time with standard medications, when the client has access to experts in palliative care. Even with optimal care, a small percentage of clients will likely have intractable symptoms that may require sedation until death.
Family caregivers of clients known to be in advanced stages of a terminal illness should have plans in place to treat symptoms of distress when a client’s condition begins to decline. Some healthcare providers may avoid discussing symptoms of distress or decline, in an effort to prevent caregiver distress. However, in order to be in the best position to prevent patient suffering, it is necessary to gently inform caregivers what to look for, and what to report to the hospice nurse on call, to ensure prompt treatment. Many hospice agencies arrange for small amounts of a few medications that would likely be effective for common symptoms of distress, should symptoms occur suddenly. These medications are commonly packaged as a “symptom relief kit” or “comfort kit.” Having these kits accessible is especially important for clients who wish to remain in their homes until death.
The medications in these kits are generally in a form that can be administered by lay caregivers to clients who are unable to swallow. For example, morphine is usually supplied as a liquid solution that can be given sublingually in the cheeks or in the buccal mucosa (for example, front of the lower gum line). Lorazepam (Ativan®) tablets, which can be given for nausea or agitation, can be crushed, mixed with a drop of water, and placed under the client’s tongue. Hyoscyamine tablets or Atropine ophthalmic drops are often given orally for excessive secretions. Medications can also be compounded and combined with a gel, which is applied on the client’s skin (for example, wrist). The medication is absorbed transdermally, and the client receives the effect from whatever medication was compounded. Medications such as lorazepam (Ativan), diphenhydramine (Benadryl®), and Haloperidol (Haldol®) are often given in this form because of the ease they allow for delivering medication to clients who are agitated. Medications that require RN administration may also be added to the kit, because most hospice agencies have an RN on call who can administer the medication if needed. Only small amounts
of medications are placed in the kit in an effort to minimize costs while allowing treatment for a variety of symptoms. Medications in the kit generally provide 12 to 16 hours of symptom management to allow relief until additional medications can be ordered and obtained.
of medications are placed in the kit in an effort to minimize costs while allowing treatment for a variety of symptoms. Medications in the kit generally provide 12 to 16 hours of symptom management to allow relief until additional medications can be ordered and obtained.
Development of such kits requires collaboration among pharmacists, nurses, and physicians to determine what medications should be included and how kits should be ordered and used in practice.Table 13-1 provides an example of a home hospice symptom relief kit. Use of this kit has facilitated prompt and effective relief of symptoms for many clients, while avoiding uncomfortable and costly emergency room visits or hospitalizations. Nurses admitting clients to home hospice or palliative care programs should ideally arrange to have such kits prescribed and delivered to homes prior to the onset or intensification of a distressful symptom such as pain.
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