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End of Life Issues:
End of Life Issues:
Pain Management and Enhancing Quality of Life-3 Nursing CEs
Author: Kristi Hudson RN MSN CCRN

 
Course Description:
This course is designed to give an in depth look at the care and management of the patient/family facing end of life care issues. Definition of terms such as hastening death, withdrawal of care, futility and DNR status will be explored. Ethical considerations that patients, families and healthcare workers face regarding end of life issues, as well as legal aspects such as advanced directives and legal power of attorney will also be presented. End of life pain management issues such pathophysiology, the use of opioids/adjunctive medications, barriers to pain and the potential for drug toxicity will also be discussed.  Non-pain palliative care focusing on enhancing quality of life will be the final focus of this course.
 
Course Objectives:
  • Upon completion of this course the student will be able to:
  • Define Futility and Withdrawal of Care
  • Explain the difference between Do Not Resuscitate vs. Do Not Treat
  • List 3 major ethical considerations that healthcare workers face regarding end of life issues
  • State the benefit of having an advanced directive
  • Describe the pathophysiology of opioids for treating end of life pain
  • Understand the use of opioids/adjunctive medications in end of life care
  • Discuss signs and symptoms of opioids toxicity in end of life care
  • Explore the potential barriers to pain control with end of life care
  • List nursing interventions for 3 non-pain symptoms that are frequently present at end of life
  • Describe appropriate NANDA nursing diagnosis’ for end of life care

Definition of Terms:

  • Hastening death – any act that hastens death.
  • Withholding Care – usually refers to withholding food and water.
  • Withdrawal of Life Sustaining Treatment – removing mechanical ventilation devices, medications such vasopressors or any other medical treatment that by doing so will hasten a person’s death.
  • Futility – refers to withdrawing care because efforts to keep a patient alive are deemed to be futile by healthcare professionals.
  • Physician Assisted Suicide – currently only legal in the State of Oregon. PSA is a detailed process that allows a physician to prescribe a lethal dose of sedatives (usually Phenobarbital) to patients who then on their own accord commit suicide.
  • Do Not Resuscitate (DNR) – refers to the patients/families wishes to not be revived with cardiopulmonary resuscitation should the patient develop cardiac or respiratory arrest (this does not mean do not treat).
  • Do Not Treat – in addition to being a DNR, some patients/families also request a do not treat order. This is usually a request to not intervene in any type of life sustaining effort (anti-hypertensives, antibiotics, vasopressors etc.)
  • Chemical Code – this refers to the patient/family request to use medication only (no CPR or defibrillation) if cardiac or respiratory arrest occurs.
  • Euthanasia – is usually referred to as either painlessly putting to death or failing to prevent death from natural causes in cases of terminal illness.

Ethical/Legal Considerations in End of Life Care:

A quick review of some basic principles

Defining Ethics:

  • Ethics is defined as “a system of rules or principles that are used to guide human behavior”. Biomedical ethics includes in its definition the application of principles, theories and problems that occur in the healthcare or medical field.
Ethical Principles:
  • Respect for Autonomy – refers to self-governance, liberty rights, privacy, individual choice, freedom of the will, causing one’s own behavior and being one’s own person.
  • Nonmaleficence – refers to not inflicting harm. As stated in the Hippocratic Oath; “Above all (or first) do no harm”. (This is the cause of many ethical dilemmas in healthcare).
  • Beneficence – refers to actions (mercy, kindness, humanity) that benefit others (this is the counter argument for those who stand by nonmaleficence).
  • Justice – justice assures that treatment is fair, equitable and accessible to all.
The Six Pillars of Ethics (the ground rules of ethical decision making):
  • Trustworthiness
  • Respect
  • Responsibility
  • Fairness
  • Caring
  • Citizenship

Ethical Decisions to Consider:

Shared Decision Making – in most cases ethical treatment decisions should be shared between physician, other healthcare professionals, patients and families. The physician has a legal responsibility to inform the patient/family of treatment options and medical recommendations that are thought to be in the best interest of the patient. The patient can then use his or her autonomy to accept or reject these options. Even though this can cause some conflict, the patient’s wishes should prevail.
The Right to Refuse Medical Treatment – the right to refuse medical treatment is deeply rooted in medicine and law. Legal cases surrounding these rights include:
  • The patient has decision making capacity
  • The patient without decision making capacity earlier expressed his or her treatment preferences for end of life care (verbally or in writing)
  • The patient without capacity has made no earlier treatment preferences
  • The patient never did have the capacity to make treatment preferences
Forgoing Treatment on the Basis of Medical Futility – there is no obligation on the part of the physician to provide treatment that is futile. Futility can be divided into two categories, the first being post-hoc futility which means treatment has been tried and has failed. The second being predictive futility which involves a prediction that treatment will be of no benefit and therefore should not be attempted. The key to discussing issues of futility with patients and families must focus on clear communication and understanding of expected outcomes.
Killing vs. Allowing to Die – discontinuation of life support (whether based on futility or patient/family request), can cause considerable anxiety for patients and families. Clear explanations about the difference between killing and allowing someone to die must be explained to patients/family members by healthcare professionals.
Euthanasia and Physician Assisted Suicide – though variously defined, euthanasia essentially refers to a patient’s death by medical means (performed by a physician) and it can be considered to be voluntary or involuntary. What commonly distinguishes euthanasia from murder is its merciful nature. Physician Assisted Suicide differs from Euthanasia in that the patient actually injects themselves with a lethal dose (prescribed by a physician) and commits suicide by there own hand.

Legal Considerations in End of Life Care:

With advances in medical technology and extended life expectancy rates; making determinations about healthcare wishes at the end of one’s life is not only recommended but truly imperative. With the Patient Self-Determination Act (1990), it is now the “law” that all patients entering the healthcare system (hospital, home health, nursing home) must be given information regarding their right to engage in or refuse medical treatment. This information can be conveyed verbally to family and friends but it is best if this information is put in a legal document. The following are suggested documents are commonly used to express one’s medical decisions:

Advanced healthcare directive- Individual healthcare written instructions for adult patients executed after July 1, 2000. Though advanced directives can take many forms and the laws regarding advanced directives do differ from the state to state, a good advanced directive should convey the answers to the following questions:
  • Who is the healthcare decision maker if you are not able to make medical decisions for yourself?
  • What medical treatments and care would you like?
  • What is your expectation of recovery from unexpected injury?
  • Would you want to be hospitalized or stay at home if you are terminally ill?
  • How will care be paid for? Do you have adequate insurance?
Durable Power of Attorney for Healthcare- this is the same as an advanced directive, it was just executed prior to July 1, 2000.

Natural Death Act Declaration- A written healthcare instruction specifically identifying healthcare decisions for a patient with a terminal illness, this must have been executed prior to July 1, 2000.

Living Will- A written healthcare instruction prepared by an attorney, typically called "Directive to Physician."
Note; All patients entering the hospital should be told about advanced healthcare directives and, if they do not have one, they should be provided with the opportunity to complete one.
 
Difficulties in Managing Pain in End of Life Care:
Defining Pain:
Within the nursing world pain is described as “whatever the experiencing person says it is, existing whenever he says it does”. Given a more physiologic definition; pain is also defined as “an unpleasant and emotional experience caused by noxious stimuli (usually tissue damage)”. In addition to “physical pain” there are several other types of pain that the end of life patient may be experiencing. These include:
  • Emotional Pain – Hearing patients complain about being incapacitated, not spending enough time with their children/family or feeling useless are all signs of emotional pain. By not appearing to be hurried, taking time to listen or just sitting down and talking for a few minutes can have a powerful impact on emotional pain.
  • Spiritual Pain – Hearing patients state concerns about the “meaning of life” or show signs of the grieving process (denial, anger, bargaining, depression, acceptance) are good indicators that they are suffering on a spiritual level (spiritual pain does not have to be a religious experience). As mentioned above, not appearing to be hurried, taking time to listen or just sitting down and talking for a few minutes can have a powerful impact on spiritual pain. Offering to contact the patient’s Chaplin may also be of help.
  • Social Pain – Signs of distancing or withdrawing from family and friends, concern regarding role changes or signs of isolation are all strong signals that your patient is suffering social pain. The best way to counter social pain is to help family and friends understand that these feelings are not a personal attack on them, and that they can help reduce this pain by making small gestures such as being present, holding the patients hand, bringing in their favorite things (pillow, blanket, music).
  • Financial Pain - Financial pain may occur when patients feel that financial resources are insufficient to absorb the costs of their healthcare or to care or provide for their families. The nurse can be the most helpful in assisting to decrease financial pain by helping the patient work with social workers and case managers to understand complex insurance issues, disability benefits and community resources.

Nursing Management of the patient experiencing either acute or chronic pain at end of life includes:

  • Administer ordered medication and evaluate response
  • Provide appropriate positioning for alignment and comfort
  • Educate regarding diaphragmatic breathing and splinting
  • Monitor/Manipulate environment
  • Encourage progressive relaxation or imagery
  • Heat/Cold/Massage
  • Keep communication simple (severe pain causes patients to lose their sense of humor and be distracted)
  • At times when patient is more tolerable, encourage patient to remain active and participate in self-care activities as much as possible.

Note: A large barriers to pain control includes reluctance on the part of the patient to report pain for fear of bothering people or becoming drug addicted, clarify any misconceptions that you may suspect.
 
Pathophysiology of Opioids:
  • Activation of opiate receptors inhibits synaptic neurotransmittors in the central and peripheral nervous systems.
  • The physiologic effects of opioids are principally transmitted through both Mu and Kappa receptors.
  • The Mu and Kappa receptors cause analgesic, euphoria, respiratory depression and miosis effects, with the Kappa receptors adding a sedation effect.
  • Sigma and Delta receptors also transmit the effects of opioids by mediating dysphoria, hallucinations and psychosis.
  • Peak opioids effects generally are reached in 10 minutes with the IV route, 30-45 minutes with the IM route and 90 minutes with the PO route
  • All opioids have a prolonged duration of action in patients with liver disease because of impaired hepatic metabolism. This may lead to drug accumulation and opioids toxicity.
  • Opiate metabolites are excreted in the urine, making urine toxicology useful Renal failure also leads to toxic effects from accumulated drug or active metabolites

Types of Opioids:

Short-Acting
  • Most opioids in their usual form are short acting. They take
  • effect approximately30 minutes and last for approximately 4 hours.
  • Short acting opioids which as combined with an over the counter agent such as acetaminophen (Tylenol) are good to take prior to doing something that usually causes pain (getting out of bed and in to a chair for example).
  • Occasional use of short acting opioids minimizes side effects and is less likely to cause tolerance or withdrawal symptoms.

Long-Acting

  • Long acting opioids can be made in time released tablets, capsules or patches. This allows for gradual release and a longer continuous effect.
  • The oral, long acting opioids are usually taken every 8 to 24
  • hours, and the patch type is designed to last 3 days.
  • Long acting opioids are best used when continuous pain control is required.
  • Long acting opioids can be combined with short acting opioids to boost effectiveness and allow people to function better (both are often prescribed for terminal cancer patients).
  • Continual use of long acting opioids can cause tolerance to the medication.

Signs and Symptoms of Opioids Toxicity include:

  • Depressed level of consciousness
  • Respiratory depression (Bradypnea)
  • Papillary miosis
  • Arrhythmia
  • Seizures
  • Hypotension (from peripheral vasodilatation)
  • Hypertension (if severe is caused by tissue hypoxia)
  • Anxiety/Paranoia
  • Pruititis, flushed skin and urticaria (due to histamine release)

Commonly used Opioids in End of Life Care Include:

  • Codeine
  • Demerol
  • Fentanyl
  • Hydrocodone
  • Hydromorphone
  • Levorphanol
  • Morphine Sulfate
  • Methadone
  • Oxymorphone
  • Oxycodon

Weak vs. Strong Opioids:

Weak Opioids that are usually mixed with Tylenol or Codeine such as Vicodin or Fiorinal are opioids that can relieve mild to moderate pain that is usually rated with a pain score less then 5. Strong Opioids such as Demerol, Fentanyl or Morphine are for more severe pain that is usually rated with a pain score of 5 or greater. The World Health Organization recommends a “Pain Ladder” as a suggested format for the development of pain relief regimens for patients with chronic end of life pain. This ladder is designed to increase the strength of the opioid based on increases in pain.

Adjuvant analgesics are medicines that have a purpose other than treatment of pain but that help relieve pain in some situations. Adjuvant analgesics used to help relieve pain include the following:
  • Antidepressants (found to relieve neuropathic pain)
  • Anticonvulsants (found to relieve tingling and burning pain)
  • Steroids (found to relieve swelling and bone pain)
  • Local Anesthetics (found to relieve tingling and burning pain)
  • Pain Assistors (Vistaril with demerol found to decrease nausea and enhance effects of demerol)
Note: Lack of Education is the major barrier to effective pain relief for end of life care. Patients who require high doses of opioids and adjunctive therapy will require extensive training and education regarding pain management. Cultural barriers such as fear of addiction and feelings of losing independence also must be addressed.
 
Palliative Care to Address Non-Pain Symptoms in End of Life Care:
Palliative care is defined as any form of medical care or treatment that concentrates on reducing the severity of symptoms and disease but does not provide a cure. It is aimed at improving or enhancing quality of life for someone who has a terminal illness. Because medical and pharmaceutical technologies are allowing patients to live longer with such diseases as cancer and HIV/AIDS; palliative care is also expanding to include social, psychosocial and spiritual aspects of care. Other non-pain end of life symptoms that frequently occur are also being included in the palliative plan of care. The following are nursing interventions for some of the common non-pain end of life symptoms:
  • Delirium and Dementia – if the cause of delirium and/or dementia cannot be attributed to the use of pharmacological agents, focus should be placed on treating the actual presenting symptoms (sedatives may be required). In severe cases attempting to re-orient the patient will not be successful, but trying to keep the environment calm and free of additional stress for both patients and families is thought to help.
  • Dyspnea – non pharmacological interventions include positioning for comfort, keeping head of bed elevated, propping arms up on pillows. Keeping the room or environment cool with fresh air is possible will also help. The presence of family, music and purse-lipped breathing may also help to decrease the anxiety that is present when someone feels they are not breathing adequately. Pharmaceutical treatment includes Oxygen, inhalers, nebulized breathing treatments and opioids.
  • Nausea/Vomiting – fear, anxiety, pain, radiation, chemotherapy and opioids use (often due to constipation) are the major causes of nausea in end of life care. Determining the cause of nausea and choosing the appropriate treatment (usually pharmacological) is the best intervention.
  • Fatigue – death is tiring and determining an individual plan that provides an adequate rest/activity balance is imperative to avoid exhaustion and fatigue. If fatigue is from inactivity due to disability, pharmacological intervention (such as an anti-depressant) may help decrease feelings of fatigue.

NANDA Nursing Diagnosis for End of Life Care Issues:

  • Ineffective Coping
  • Knowledge Deficit
  • Pain
  • Impaired Mobility
  • Fear and Anxiety
  • Fatigue
  • Altered Nutrition
  • Potential for Injuries (falls)
  • Potential for Skin Breakdown
 
References
American Psychological Association. (2005). End of live issues and care. Retrieved on November 30, 2005 at:
http://www.apa.org/pi/eol/terminology.html
Beauchamp, T., L. & Childress, J., F. (2001). Principles of biomedical ethics. (5th ed.). (Chapter 1, 6, 8). Oxford University Press.
Davis, M., P.  Cancer pain (2002). Retrieved on December 3, 2005 at:
clevelandclinicmeded.com/diseasemanagement/hematology/cancerpain/cancerpain.htm#table3
Family Caregiver Alliance. (2005). End of life decisions. Retrieved on November 30, 2005 at:
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=401
Hightower, D. & Vaughn, P. (2003). Survivorship and the changing role of palliative care. Retrieved on December 3, 2005 at:
www.cancer.gov/newscenter/benchmarks-vol3-issue4/page1
McCance, K., L. & Huether, S., E. (1998). Pathophysiology the biological basis for disease in adults and children. (3rd ed.). Mosby. St. Louis
National Cancer Institute. (2004). Palliative Care. Retrieved on December 3, 2005 at:
www.cancer.gov/newscenter/benchmarks-vol3-issue4/page1
Panke, J., T. Journal of Hospice and Palliative Nursing 5(2):83-90, 2003. Lippincott Williams & Wilkins. Philadelphia
Stephens, E. MD. (2005). Toxicity, narcotics. Retrieved on December 3, 2005 at:
http://master.emedicine.com/EMERG/topic330.htm
Walker, R., M., MD. (2003). Ethical issues in end of life care. Retrieved on December 2, 2005 at:
www.moffitt.usf.edu/pubs/ccj/v6n2/article4.htm

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