Pain Management Options
Based on the category of illness and their stage level of sickness and their levels of pain, pain is usually caused by underlying inflammation and terminally ill patients will rely on a specific class of opiates and other pain relievers as part of their plan of care and management.
In particular, morphine, an aggressive form of medication used to treat severe pain, is a member of the opiate class. Typically, it is prescribed and used when drugs such as acetaminophen, also known as Tylenol, or ibuprofen, also known as Advil or Motrin cannot provide pain relief.
Motrin can also be used to treat the shortness of breath, also known as dyspnea. Hydrocodone and oxycodone, also members of the opiate class, too, treat severe pain.
This class of drugs functions by binding to opioid receptors in the brain, the spinal cord and other parts of the body. They decrease the delivery of pain messages to the brain and scale back actual pain. When a patient follows instructions for using these drugs, he or she safely and effectively relieve pain.
To achieve pain relief, physicians and specialists may need to prescribe around-the-clock dosing of opiates for their patients. Once pain is relieved and a consistent level of dosing has been used for days, doctors may need to decrease the dose slowly without the pain ever returning.
Doctors refer to such a change in dosing as titration, which they recommend must be conducted carefully. They also suggest that patients who have been consuming opiates for over two weeks must scale back on their dose slowly, rather than ending it abruptly, to give their bodies time to adjust to the change.
When pain is not well-managed with around-the-clock dosages, doctors will not wait until the pain is intolerable to change regimens as poorly managed pain is difficult to handle and can cause a patient unbearable suffering. They will increase the dosing if pain does not respond or resumes after a pause.
Physicians and specialists may also use “breakthrough or rescue dosing” if pain is episodic, returning before the stoppage of a dose or because of an incident such as a patient being moved from one bed to another. Breakthrough or rescue dosing is an extra administration of an opiate in addition to a patient’s regular dosage.
Additionally, some patients may become tolerant of opiates, meaning that a stronger dose may be needed to manage pain. Tolerance is not addiction. The solution to tolerance may be to change to a different opiate drug, which may lead to greater pain relief.
Opiates, as a class of drugs, can produce side effects such as nausea, drowsiness, confusion and constipation. However, as a terminally ill patient becomes accustomed to the medication, side effects will subside or leave entirely. The ones that do remain can be controlled such as taking laxatives for constipation.
Most patients who have serious pain are frequently unable to sleep. At first dosing, opiates like morphine may sedate a patient for 24 hours as he or she makes up for lost sleep. With consistent dosing, normal mental activity will be restored.
Many individuals are concerned that using morphine and other opiates to treat serious pain in a terminally ill person will cause addiction or death. Researchers disagree, saying that the risk of addiction for patients at end of life who take morphine and other opiates for pain is non-existent.
They explain that research shows a brain in pain does not behave with morphine in the same manner that a brain that is not. Individuals grow addicted to or depend on opiates when they take them recreationally or when they do not have pain.
When well-managed by a palliative care, hospice or pain specialist, researchers say morphine or opiate administration will not likely lead to death. In fact, they argue that patients who use these pain relievers appropriately will live longer than those who do not.
Options for Non-Pain Symptoms
A terminally ill patient’s advance directive must include a section for symptom management for every stage of his or her physician’s plan of care, especially at the end of life. His or her specialists, families, friends and assigned health care agents are required to carry out these instructions, researchers say.
For instance, if the patient’s mental or physical health is declining, the projection for his or her treatment is growing bleak and there is no chance of him or her recuperating, he or she can request antibiotics for infections; dialysis for kidney failure; artificial ventilation for breathing problems, and; electroshock, stimulants or diuretics for heart failure.
He or she can also ask for heart regulating medications, including electrolyte replacement, if the heart rate becomes irregular; cortisone or other steroids if tissue swelling targets the brain, and; blood, plasma or replacement fluids in case he or she is bleeding or losing fluids.
These requests constitute “life support” as a means of temporarily allowing the body to heal so it can function fully once more. However, this is not meant for permanent use for a terminally ill patient.
In the case of a patient’s stopped heart, researchers do not recommend the use of a pacemaker and an implantable cardioverter defibrillator or ICD, which does not keep a patient alive, nor cardiopulmonary resuscitation (CPR) or with a defibrillator, a machine that generates electric shocks. CPR works primarily in patients who were once healthy and whose hearts have stopped.
It is not successful, however, in frail elderly patients. The level of pressure needed for CPR to be effective would create new problems such as broken ribs or collapsed lungs or lead to a more tragic death, especially in seniors.
Often times, a physician or specialist may recommend a ventilator, feeding tube or other technology to help a patient breathe or eat. The ventilator calls for intubation, which involves having a tube placed in the throat through its windpipe or trachea.
If the machine is needed for days, the doctor may request a tracheotomy instead, which leads to the tube placed into the trachea through a small incision he or she creates in the throat. This type of surgery can be risky, resulting in a collapsed lung, bleeding and a backed-up tube.
Additionally, tubes hold their own risks for infection, pneumonia and nausea. For a terminally ill patient, a tube may create more discomfort than not being fed. As a result, patients who have this form of feeding administered to them may often be given painkillers or are restrained.
Medicare, Medicaid, Long-Term Care Insurance To Pay
Federal spending for the Medicare hospice benefit rose about $1 billion annually. In fiscal year 1998, spending for the hospice benefit was $2.2 billion, while in fiscal year 2009, this figure increase to $12.1 billion.
Hospice care focuses on providing the terminally ill with “comfort, not cure.” Medicare and Medicaid benefits policymakers and managers say patients must cease treatments to take advantage of Medicare coverage for hospice care. Medicare will pay for any covered health issues that do not pertain to the patient’s chronic illness.
Hospice care is expensive because it is multi-faceted and comprehensive. Patients and their families pay for end-of-life care, relying on their financial status and the range of services they need.
End-of-life care can include palliative care or post-surgical care, home health care, hospice care and brick-and-mortar-based care such as that of a nursing home or assisted living facility.
A terminally ill patient’s resources to pay for hospice care could include his or her Social Security benefits, his or her pension or other retirement funds, his or her personal bank savings, his or her very limited coverage of private healthcare insurance and his or her own private home as a real estate asset through a reverse mortgage.
Patients can also use government health insurance such as Medicare and Medicaid and long-term care insurance.
Medicare covers needed care and hones in on acute care, including physician visits, medications and hospital stays. Benefits also cover short-term services for conditions that may improve such as physical therapy to restore physical ability after a fall or cardiac event.
The program does not directly recognize palliative care but Medicare Part B covers particular palliative treatments and drugs, as well as visits from specialists and social workers.
The post-surgical care or palliative care facility providing a terminally ill patient services will charge Medicare for services, given with copays or fees through a fee schedule.
For hospice care, beneficiaries are covered by Medicare part A, which is hospital insurance. A patient’s physicians and a hospice care medical director will determine whether a patient has a life-threatening disease and death can occur in six months or less.
The patient signs an advance directive to receive Medicare-covered benefits for his or her conditions and actually receives care from a Medicare-approved hospice care service.
Medicare-approved and covered hospice care services include physician services; nursing care; medical equipment such as wheelchairs and walkers; medical devices such as bandages and catheters; medications for pain relief and symptom management; short-term hospital care, including respite and inpatient care; home health aide and homemaker services; physical and occupational therapy; speech therapy; social work; nutritional counseling, and grief support.
Under Medicare policy, the patient or his or her family members must shoulder the cost of medications and inpatient respite care.
While “Medigap” policies, which are meant to supplement Medicare, do not cover end-of-life care directly, certain categories of co-payments can pay for nursing home services.
Medicaid covers particular end-of-life services such as personal care, home health care and nursing home care. Like Medicare, Medicaid does not acknowledge the term “palliative” and will cover particular treatments, drugs and visits from specialists.
Like Medicare, the palliative care facility serving a terminally ill patient may charge Medicaid for services but the patient must comprehend the copays and fees he or she must pay.
Medicaid’s hospice benefit is like the Medicare hospice benefit in the states where it is provided. However, some states might restrict the length of time covered or who qualifies so patients and their families may have to check with their state’s Department of Health or Agency on Aging.
Long-term care insurance can supplement coverage for services that Medicare and Medicaid do not cover. Some policies can cover a wide variety of options and benefits, including palliative and hospice care, that permit you to obtain services exactly when you need them.
Costs depend on a patient’s policy in terms of the type and number of services he or she selects, his or her age when he or she purchases his or her policy and other choices such as inflation-indexed benefits.
However, if a patient is already sick or has already begun to receive hospice or palliative care, he or she may not be eligible for long-term care insurance. This leaves patients with the option of purchasing limited coverage or coverage at a higher rate.
This could include nursing home-only coverage or a policy that combines home health care with assisted living, palliative, hospice or nursing home care.
SOURCES:
AGIS Network, Assist Guide Information Services, http://www.agisnetwork.com
Bickel-Swenson, D, Stephens, N., and Washington KT; Health Social Worker, “Barriers to Hospice Use Among African Americans: A Systematic Review.” (2008), Vol. 33, No. 4, pp. 267-274.
Bristowe, Katherine; Harding, Richard, and; Marshall, Steve; Palliative Medicine, “The Bereavement Experiences of Lesbian, Gay, Bisexual and/or Trans People Who Have Lost a Partner: A Systematic Review, Thematic Synthesis and Modeling of the Literature.” (September 2016), Vol. 30, No. 8, pp. 730-744.
California Association of Physician Groups, “Case Studies in Excellence 2012,” 35 pp., Los Angeles, Calif., http://www.capg.org/
Casarett, David, M.D., chief of palliative care and professor of medicine, Duke University, Durham, N.C.; Gupta, Deepak, M.D., clinical assistant professor of anesthesiology, Wayne State University, Detroit; Harris, John, M.D., assistant professor, University of Pittsburgh School of Medicine; Eric Widera, M.D., associate professor of clinical medicine, University of California, San Francisco, and director, hospice and palliative care, San Francisco VA Medical Center; Annals of Internal Medicine and HealthDay, online, “Terminally Ill Obese People Less Likely to Get Hospice Care,” (Feb. 6, 2017).
Compassion and Choices, http://www.compassionandchoices.org
Eldercare Locator, http://www.eldercare.gov.
GeroPreneur, http://www.GeroPreneur.com.
Hamilton, Jill B., PhD, RN; Mayer, Deborah K., PhD, RN, AOCN, FAAN; Spruill, Angela D., MSN, ANP-BC, OCN; Journal of Hospice and Palliative Nursing, “Barriers in Hospice Use Among African Americans With Cancer.” (2013), Vol. 15, No. 3, pp. 136-144.
Institute of Medicine (IOM) report, “The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved” (1999), 338 pp.
Jenq, Grace, Tinetti, Mary E., MD., Journal of American Medical Association, “Changes in End-of-Life Care Over the Past Decade More Not Better,” (February 2013) Vol. 309, No. 5, pp. 489-490.
Johnson, Kimberly S., MD, MHS, Journal of Palliative Medicine, “Racial and Ethnic Disparities in Palliative Care,” (November 2013), Vol. 16, No. 11, pp. 1329-1334.
The U.S. Department of Health and Human Services’ Administration on Aging (HHS-AoA), The National Clearinghouse for Long-Term Care Information, http://www.longtermcare.gov
National Institutes of Health (NIH) Senior Health, http://NIHSeniorHealth.gov.
National Institute of Nursing Research Report (NINR), “Building Momentum: The Science of End of Life and Palliative Care — A Review of Research Trends and Funding, (1997-2010), 156 pp, https://www.ninr.nih.gov/sites/www.ninr.nih.gov/files/NINR-Building-Momentum-508.pdf
National Institute of Nursing Research Report (NINR), “Spotlight on End-of-Life Research,” https://www.ninr.nih.gov/researchandfunding/spotlight-on-end-of-life-research.
Payne, Richard, M.D., Improving Palliative for Cancer, “Palliative Care for African Americans and Other Vulnerable Populations: Access and Quality Issues,” Memorial Sloan-Kettering Cancer Center, The National Academy of Sciences, (2001).
Westbrook, G. Jay, M.S., R.N., CHPN, Clinical Director, Compassionate Journey: An End-of-Life Clinical & Education Service, “Arresting Pain Without Getting Arrested” (workshop before the Advance for Nurses Career Fair in Pasadena, Calif., Sept. 9, 2010).
Westbrook, G. Jay, M.S., R.N., CHPN, Clinical Director, Compassionate Journey: An End-of-Life Clinical & Education Service, “Bereavement” (workshop before the Advance for Nurses Career Fair in Pasadena, Calif., Sept. 9, 2010).
Westbrook, G. Jay, M.S., R.N., CHPN, Clinical Director, Compassionate Journey: An End-of-Life Clinical & Education Service, “CHAPCA 1 – When Your Patient is a Substance Abuser” [California Hospice and Palliative Care Association (CHAPCA) pre-conference workshop in Lake Balboa, Calif., Oct. 5, 2011)].
