End-of-Life Issues

Helping patients die with dignity enriches the lives of patients, families and nurses.

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Learning Scope #361
1 contact hour
Expires June 20, 2013

The purpose of this article is to educate nurses about end-of-life issues. After reading this article, you should be able to:
1. Discuss the meaning of dying with dignity.
2. List ways to provide support to the dying individual as well as to their loved ones and caregivers.
3. Describe how to help caregivers safely provide pain management for those at the end of life.

I can choose to die with dignity accompanied by compassionate support and palliative medical care. Why? Because my kidneys have failed. I am on dialysis. I can end my dialysis and check into a hospice whenever I choose, sooner or later slipping into the blissful fog that comes with death from kidney failure. I am not praying for a miracle. I am accepting my death as a part of my life, a final act of giving myself to the cycle of life. In choosing how I can die, I have felt a renewed vigor in living.
- Hilding Lindquist1

When Mr. Linquist decides he wants no more dialysis or another patient's illness can no longer be treated, nursing care continues but with a change in focus. Whether at home or in a hospital or other facility, the person at the end of life as well as his loved ones and caregivers need help with medical, psychological and spiritual concerns. People at the end of life have a right to die with dignity, experience adequate pain control, and be given support that extends to their loved ones and caregivers.

Medicalization of Death

The World Health Organization states "palliative care (care that focuses on relieving and preventing the suffering of patients) . affirms life and regards dying as a normal process . [and] neither hastens nor postpones death."2 The intent is to provide everyone with the right to die with dignity and the right to receive appropriate care during the dying process.

Many religions promote the concept each person needs to accept death (their own as well as others) as a part of life. This does not imply a person can intentionally take one's own life and/or help others to do so.3 However, it does emphasize individuals have a responsibility to participate in preparation for their own death.

Paulina Taboada, MD, writes that the groundbreaking work of Elisabeth Kübler-Ross, MD, suggests everyone has an opportunity to come to terms with their own death, their choice leading to what has been described as either a "good" or a "bad" death.3,4 Thus, death is not merely something that happens to us (a passive event), but that by our free will we can choose an attitude of acceptance (good death) or a negative stance like rebellion (bad death) when faced with imminent death. The "medicalization of death," viewing death as a clinical event, is often in opposition to acceptance of death.3

Throughout history, death has been understood as the end of earthly life and for some people the entrance into eternal life. In the not-so-distant past, people died at home in the presence of their family and perhaps clergy. The "medicalization of death" started during the 18th century when a physician was called to the home of a dying person to help relieve pain so the person could die comfortably. Over time, the physician replaced the clergy at the bedside, and the dying moved from home to a hospital or other institution. With that, death was no longer seen so much as a spiritual transition but as a medical condition, the person not considered dead until pronounced dead by a physician.5

The "medicalization of death" sets up a situation where it is hard to determine when there is no longer any treatment available to sustain life. Healthcare consumers rely on medical treatment and the knowledge of healthcare professionals to prolong life. Health professionals may over-treat to avoid any perception of undertreatment. Additionally, some health professionals view death as defeat and have difficulty accepting a patient's death. These factors lead to a difficult situation where it is hard to know when there is no longer any treatment available and palliative care should be started.3,5,6

Nurses have long known and research has supported overtreatment may actually prolong dying and with it pain and suffering for both the patient and their loved ones.6 Nurses also know death has deep cultural and religious meaning that shapes how it is understood and determines what is considered appropriate behavior, both for the dying person and loved ones, as well as for the caring personnel.

Role of Nurses

What can nurses do to help promote death with dignity for their patients and their loved ones? First, nurses need to accept death as part of life and become sensitive to the moral and religious dimensions that shape their own attitudes toward life and death. Nurses, especially those working with patients with terminal conditions, need to face the challenge of helping the dying master their own death.

The hospice and palliative care movements have started the change. Nurses need to add momentum to the change: advocate for their patients, become members of ethics committees and bring up sensitive issues for discussion among colleagues.

Here are some general suggestions to help patients maintain their dignity and sense of personal control at the end of life.7

• Keep the person company. Talk, watch movies, read or just be present
• Allow for the expression of fears and concerns about dying.
• Be willing to reminisce with the person about his life. Learn his story.
• Include the patient in discussions about issues that concern him.
• Provide reassurance all advance directives will be honored.
• Respect the person's need for privacy.

Learn more: The National Cancer Institute has many articles about end-of-life concerns. Access them at http://www.cancer.gov/.

For Families & Loved Ones

Loved ones and family caregivers need support, too. Certain things occur as death approaches. Explaining how to handle them is helpful. Here are some suggestions to share with family members and loved ones.7

• When the person is drowsy and withdrawn: Plan visits at times when their loved one is most alert. Speak directly to the person and talk as if he can hear. Always let him know when you are there and when you will return. Recall the person may be aware and able to hear, but unable to respond. Remind them not to shake their loved one if he does not respond.

• If confusion, visions of people and places that are not present, or pulling at bed linens or clothing occurs: It is OK to orient the person to time, place and the people who are with him. However, avoid causing distress. It is OK to go with the flow of the person's conversation, taking the conversation wherever he does.

• If the person is restless: Explain restraint is not helpful. Be calm and reassuring.

• If the person refuses food and fluids and complains of loss of appetite: Never force people to eat or drink. Allow choices. Check ability to swallow; thicker fluids may be easier to swallow than thinner ones. Always keep his mouth and lips moist.

• If the person experiences noisy, slowed, shallow or irregular breathing: Make the person more comfortable by turning him on his side, and placing pillows beneath his head and behind his back. Remind all visitors that, although labored breathing may be distressing to them, the gurgling and rattling sounds are not causing discomfort to their loved one. Oxygen and cool mist humidifiers may make him more comfortable.

Review with the dying person's loved ones what to expect as death nears: loss of bladder or bowel control, darkened urine, skin cool to the touch, involuntary movements, changes in heart rate, and loss of reflexes in the legs and arms. Work with the family members to provide comfort.

Learn more: Caring Connections: National Hospice and Palliative Care Organization has more information about how to help patients and their loved ones. Access them at http://www.caringinfo.org/.

Pain Control

According to the American Pain Foundation's Pain Care Bill of Rights, all patients have a right to have their report of pain taken seriously, be treated with dignity and respect, and have their pain thoroughly assessed and promptly treated.8

There is consensus opioid analgesics may be needed to treat moderate-to-severe pain at the end of life. According to the Controlled Substances Act, opioids "have a useful and legitimate medical purpose and are necessary to maintain the health and general welfare of the American people."9 All healthcare professionals have a responsibility to understand opioid analgesic benefits and risks. Uncontrolled pain adversely affects almost every aspect of a person's life.10

Many people now choose to stay at home when death is near. Teach family members and caregivers how to safely use opioids while caring for their dying loved one at home. Offer these suggestions:

• Keep opioids in a safe place. Secure them the same way as other valuables in the home, like jewelry or cash. Take all opioids out of the medicine cabinet and hide them in a place only the caregiver knows about. Safe places to lock up opioids include a locked medicine storage box, fire safe or gun safe, a cut-proof bag designed for travel safety or a "vacation vault."

• Be aware of drug interactions. Mixing opioids with other non-prescribed analgesics or psychotherapeutic medications, or with alcohol or illicit drugs, may cause drug-drug interactions or toxicity.

• Benzodiazepines enhance the respiratory depressant effects of opioids. Avoid combining benzodiazepines with opioids, especially just prior to sleep. When a sleep aid is indicated, use alternative treatments like an anticonvulsant or a low dose of a tricyclic antidepressant.

• Methadone's half-life ranges from 5 to 150 hours, although its analgesic effect usually lasts only 6-8 hours. This unusual pharmacokinetic profile can contribute to an unpredictable accumulation of methadone during the first few weeks of its use. Start methadone at a very low dose and increase slowly.

• There is a high prevalence of sleep apnea in people on long-term opioid therapy. Respiratory infections or asthma attacks increase the danger. Reduce the opioid dose during upper respiratory infections or asthmatic episodes. Instruct caregivers to consult with their care providers before adjusting doses and to always report any signs of emerging pain or withdrawal symptoms immediately.

• Always use opioids as directed. Make sure the caregiver knows how to use extended-release opioid products or patches.

When planning for comprehensive pain management, it is wise to include alternative pain management techniques such as application of heat and cold, aromatherapy, acupuncture, massage and transcutaneous electrical nerve stimulation, relaxation and breathing exercises, and the use of diversion such as music and movies.

Learn more: To learn more about opioids and using them safely, go to http://www.painfoundation.org/ and search "Opioids Are a Treatment Option."

Dying With Dignity

Mr. Linquist has a profound message for us all. His writing shows how he has chosen to become an active participant in his dying - a person dying with dignity - a person dying a "good" death.

Nurses can help their patients at the end of life experience a pain-free, dignified and comfortable death surrounded by their loved ones. Doing this enriches their lives and the lives of their family members. Doing this also enriches the life of the nurse, for by helping others we also help ourselves.

References for this article can be accessed here.

To view the Course Outline and take the test online, click here.

For a printer-friendly version of the exam you can print out, complete and mail in to ADVANCE click here.

Joan M. Lorenz has worked in long-term care, palliative care and hospice, and is president of Clearly Stated, Gainesville, FL. The author has completed a disclosure form and reports no relationships relevant to the content of this article. 




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