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The most important part of hospice care is the management of a patient’s pain. Despite many medical advances in the treatment of pain, during the challenging time that marks the end of a person’s life, pain can sometimes persist.
Under-treated pain can lead to a patient needlessly suffering from mental distress and physical pain at life’s end. But knowing how pain will be managed before going into hospice can help patients and their caregivers understand what they should expect.
There are many ways to successfully manage pain for hospice patients. Together, patients, their families, and the hospice team will develop the best care plan that eases suffering and provides the best quality of life during a patient’s final days.
Hospice nurses have specialized training in pain assessment and management. Hospice nurses use validated pain scales as well as family and patient reports to determine the type and degree of pain and response to treatment.
“They also look for nonverbal signs of pain such as furrowing of the brow, restlessness, fidgeting, moaning or other repetitive vocalization,” says Sarah Minor, D.O., medical director for INTEGRIS Hospice. “These nonverbal signs can be a proxy for pain or discomfort when the patient cannot describe symptoms or ask for medications.”
In addition, hospice nurses can use unique routes of administration for pain medication outside of the usual pill or capsule. “For instance, some medications can be given under the tongue in concentrated amounts to avoid large amounts of liquid. This helps patients who may have difficulty swallowing pills or liquids. An implanted port or an IV can be used for a pain pump if a person needs a more continuous pain regimen,” Dr. Minor says.
Since emotional or spiritual pain can contribute to overall physical pain, part of every hospice assessment is evaluating how emotions are impacting a patient’s pain level.
Treating emotional or spiritual suffering can greatly enhance quality at end-of-life.
“Our social workers and chaplains help assess and treat emotional and spiritual pain, no matter whether a person professes a certain religion or faith. Being able to find an emotional or spiritual peace is key to easing pain while living at the end of life,” says Dr. Minor.
Despite advances in the understanding of pain control during hospice, family members or patients may fear how pain medication may affect them. Some worry that narcotics could cause them to stop breathing while others worry about addiction issues.
“There is valid concern about the abuse of opioid medications today, but it is essential that hospice patients have access to medications that control pain. It is well known that opiates do help patients achieve pain relief and even relieve shortness of breath. We want the right people to have access to medications to relieve symptoms without medications getting into the wrong hands,” says Dr. Minor.
Hospice has several strategies to manage a patient’s pain while also ensuring the pain medication doesn’t end up where it is not supposed to. First, hospice nurses keep a close eye on a patient’s prescribed medication, and only supply a small amount of medication at a time. A lockbox can also be used for medications in the home if the situation requires.
Since the hospice nurse is in a patient’s home frequently, and is constantly assessing pain levels, medication adjustments can be quickly made. “The nurse may also do a pill count to make sure no medication is missing, and that the person is using the appropriate amount of medication,” Dr. Minor says.
Finally, hospice nurses and staff provide training to families and caregivers, specifically about the use of opiate medications and how to administer and manage these medications.
Yet many families still worry that a hospice patient may become addicted to opiate medication. But as Dr. Minor points out, “If a hospice patient is taking opiates for the relief of physical pain, they are not considered an addict, no matter how much they take.” Keeping a patient pain-free is a much more important priority at the end of life.
Some families also worry that hospice care means a person will be given unlimited morphine until death occurs and that it will cause a person to be “out of it” and not alert.
But Dr. Minor says, “As a hospice physician, I must carefully weigh the balance of symptom control with quality of life. If a person is awake and pain is managed with a small amount of morphine, I want to keep this balance for as long as possible. But if a person is anxious and miserable and restlessness whenever he or she is awake, I may allow for medication to cause some drowsiness for the sake of comfort.”
However, she says, “These decisions are not made in isolation. They should be discussed with the patient and family and be consistent with the patient’s goals of care.”
Although morphine is used frequently for management of pain and shortness of breath in patients receiving hospice care, not all pain will be treated with morphine. There are multiple medications that can be used as adjunct therapy such as antidepressants, steroids, gabapentin for nerve pain and nonsteroidal anti-inflammatory medications, to name a few. For cancer patients with multiple tumors or bone pain, sometimes palliative radiation may be more useful than any amount of morphine in relieving pain.
No matter what the medication is, narcotics should always be taken exactly as prescribed by the patient’s physician in terms of dose and frequency. Do not increase either dose or frequency without contacting a physician and letting him or her know that adjustments need to be made.
Hospice care is provided in a team approach, for both the patient and the patient’s family. Each family member is also under the care of the hospice team, which includes an RN, chaplain, social worker, home health aide and volunteer. This team of hospice caregivers is expert at helping patients die with peace and dignity and providing comfort and compassion to the patient’s family.
“Most of the time these families have not had to go through the end of life with a loved one, so it is all new territory,” Dr. Minor says. “I always advise people to just ask questions if they wonder why the hospice team may do something or not do something.”
The end of life is simply part of life. The hospice team is there to help the patient and family live well through the dying process. For more information about end of life or treatment, visit INTEGRIS Hospice. For more information on INTEGRIS Hospice House of Oklahoma City, call 405-848-8884.