Lecture 8: End-of-Life Care Lecture Notes PDF

JESMAR S. ESPIRITU Associate. Professor END OF LIFE CARE  LEARNING OUTCOMES AT THE END OF THE SESSION THE STUDENTS WILL BE ABLE TO: 1. Recognize key principles of geriatric end-of-life care, including patient-centered care, family dynamics, and interprofessional collaboration 2. Descri...

JESMAR S. ESPIRITU Associate. Professor END OF LIFE CARE  LEARNING OUTCOMES AT THE END OF THE SESSION THE STUDENTS WILL BE ABLE TO: 1. Recognize key principles of geriatric end-of-life care, including patient-centered care, family dynamics, and interprofessional collaboration 2. Describe common physical, emotional, and cognitive changes associated with aging and end-of-life stages 3. Identify ethical and legal considerations in end-of-life care, such as advance directives, informed consent, and respect for patient autonomy.  LEARNING OUTCOMES 4. Demonstrate effective communication with patients, families, and the healthcare team about end-of-life options, goals, and preferences. 5. Assess and manage symptoms common in end-of-life care, such as pain, dyspnea, and emotional distress, using evidence- based interventions. 6. Utilize holistic and culturally competent care strategies, including spiritual, psychological, and social support, to enhance patient comfort and dignity.  LEARNING OUTCOMES 7. Reflect on personal attitudes toward aging, death, and dying, and recognize the impact these attitudes have on patient care. 8.. Advocate for quality of life and respect for patients' end-of-life wishes in all aspects of care planning. 9. Maintain professional boundaries while demonstrating empathy and compassion for patients and families facing end- of-life decisions.  CURATIVE/ACUTE CURE Life-prolonging and acute care options focus on cure HOSPICE CARE Nonlife prolonging care, provide comfort and dignity at end of life. PALLIATIVE CARE Refers to comprehensive management of physical, psychological, social, spiritual and existential needs of the patient.  Care of people with incurable and progressive illnesses Achieve the best quality of life, control of pain, and other symptoms Nurse’s primary responsibilities is to ❑ coordinate patient’s ❑ care and to assist with Symptom ❑ Management or Focus on treating Symptom  Physical Non pain symptoms ❖Respiratory – ✓ difficulty of breathing, ✓ excess secretions, ✓ anxiety ❖Gastrointestinal ✓constipation, ✓nausea/vomiting  Anxiety and Delirium ✓Anxiety at end of life ✓loss of control, loss of self esteem, ✓loss of independence ❖ treating physical symptoms of pain and SOB, antianxiety meds ✓ Delirium – fluctuating cognitive disturbance, changes in mental status, occurs in the last hours to days of most dying patients ✓environmental comfort by reducing 1. stimuli, 2. reorientation, 3. familiar person at bedside, 4. health team members providing emotional, social and spiritual support, music therapy, therapeutic/healing touch, 5. Non-medical nursing interventions, 6. anti-anxiety meds given cautiously NUTRITION AND HYDRATION ❑Declining appetite for Dying persons, less active body requires less nourishment Hydration is detrimental to fluid overload ✓Give bites rather than regular portions, foods in variety ✓Provide small amounts of fluid like popsicles or ice chips, meticulous ✓ mouth care for dry mouth PHYSICAL, PAIN SYMPTOMS “We all must die. But if I can save him from days of torture, that is what I feel is my great and ever new privilege. Pain is more terrible Lord of mankind than even death itself” Albert Schweitzer ❑Unrelieved pain can contribute to unnecessary suffering, evidenced by sleep disturbance, hopelessness, loss of control and impaired social interactions ❑Pain may hasten death by increasing physiological stress, decreasing mobility, contributing to pneumonia and thromboemboli  Nurse must be able to assess pain, assist patient in describing their pain, use Wong- Baker Pain Rating scale Treatment of pain based on origins and systematic approach (pain meds and adjuvant) Pain meds remain the 1st line of tx Opiods are used if nonopiods ineffective Understanding between addiction and tolerance, physical dependence  Physiological Type of Pain Nociceptive: ✓pain that occurs when body tissue is damaged or injured. A. Tissue injury Skeletal system, soft tissue, joints, skin or connective tissue Localized pain can be point by finger Describe as throbbing, dull, aching, gnawing in nature Treated with NSAIDs, steroids partially responsive to opoiod therapy or combinations B.Visceral pain pain that originates in the internal organs and blood vessels of the chest, abdomen, and pelvis Interstitial cystitis/bladder pain syndrome Visceral pain pain that originates in the internal organs and blood vessels of the chest, abdomen, and pelvis Unable to localize, may use open hand to show affected area, pain is diffuse Deep, aching, cramping or sensation of pressure, Spread out (diffuse),Crampy., Squeezing, Gnawing, Dull, Persistent. Very responsive to opiod therapy Example is shoulder pain secondary to lung or liver metastases Neuropathic ❑injury to peripheral nerve or CNS ❑Shooting, stabbing, burning, shock- like ❑Constant or intermittent ❑Less responsive to opiods, ❑responds best to anticonvulsants, tricyclic antidepressants ❑Ex. Herpes zoster or diabetic neuropathy Transcutaneous Electrical Nerve Stimulation (TENS)method of electrical stimulation which primarily aims to provide a degree of symptomatic pain relief by exciting sensory nerves. END OF LIFE CARE  END OF LIFE THE CONCLUDING PHASE OF NORMAL SPAN ALTHOUGH LIFE CAN END AT ANY STAGE  GOALS: 1. Provide comfort & supportive care during process 2. Improve the quality of remaining life 3. Help to ensure dignified death.  PRINCIPLES: 1. Respecting patient goals, preferences & choices 2. Attention of the medical , emotional , social & spiritual needs of the dying person 3. Using strengths of interdisciplinary resources 4. Building mechanism & system of support Legal and ethical issues around end of life care in dementia  Ethical dilemmas ETHICS-referring to philosophical inquiry into good and evil Ethical dilemmas arise when more than one, sometimes opposite, actions arise because those involved in the situation have different perspectives. And because the ethical principles may suggest different courses of action. End of life definition: “Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. ❑This includes those patients whose death is expected within hours or days; ❑those who have advanced, progressive incurable conditions;  End of life definition: ❑those with general frailty and co-existing conditions that mean they are expected to die within 12 months; ❑those at risk of dying from a sudden acute crisis in an existing condition; and ❑those with life-threatening acute conditions caused by sudden catastrophic events.” Four ethical principles Autonomy : Respect the uniqueness and dignity of each person, self, and others. Non-maleficence : Prevent harm and removal of harmful conditions. Beneficence : Act to remove harm or promote benefit. Justice : Treat individuals equally. Four ethical principles Autonomy : Respect the uniqueness and dignity of each person, self, and others. Non-maleficence : Prevent harm and removal of harmful conditions. Beneficence : Act to remove harm or promote benefit. Justice : Treat individuals equally.  Duty of care You have a duty of care to all those receiving care and support in your workplace. This means promoting wellbeing and making sure that people are kept safe from harm, abuse and injury. Wellbeing -defined as the positive way in which a person feels and thinks of themselves. Your professional code of conduct tells you how you are expected to behave. Duty of care also to other workers: to doctors, nurses healthcare support workers caterers, cleaners and maintenance workers. Dilemmas that may arise between the duty of care and an individual’s rights and carers wishes When professionals suspect that a person with dementia is suffering harm from a carer or other family member or friend, they have both a legal and an ethical duty to act to protect the person with dementia as a ‘vulnerable adult’. Dilemmas that may arise between the duty of care and an individual’s rights and carers wishes The autonomy and well-being interests of the person with dementia may be highly complex, and any benefits associated from a long-standing relationship must be weighed in the balance along with the nature and extent of the harm “Therapeutic lying” ❑ Cunningham (2005) has shown that professionals often use euphemisms for lying such as ‘bending the truth’ to ease their conscience and rationalize their actions. ❑ Nursing and Midwifery standards and code state that all nurses must be "open and honest, act with integrity". The code of conduct. The Mental Capacity Act is based on five key principles. Every adult has the right to make decisions for themselves. It must be assumed that they are able to make their own decisions, unless it has been shown otherwise. Every adult has the right to be supported to make their own decisions. All reasonable help and support should be given to assist a person to make their own decisions and communicate those decisions, before it can be assumed that they have lost capacity. The Mental Capacity Act is based on five key principles. ❑ Every adult has the right to make decisions that may appear to be unwise or strange to others. ❑ If a person lacks capacity, any decisions taken on their behalf must be in their best interests. ❑ If a person lacks capacity, any decisions taken on their behalf must be the option least restrictive to their rights and freedoms. Assessing mental capacity The Act sets out a single clear test for assessing whether a person lacks capacity to take a particular decision at a particular time. It is a 'decision-specific' test. No one can be labelled 'incapable' as a result of a particular medical condition or diagnosis. Assessing mental capacity A lackof capacity cannot be established merely by reference to a person's age, appearance, or any condition or aspect of a person's behavior which might lead others to make unjustified assumptions about capacity. To test if the person has capacity: Does the person have an impairment of the mind or brain, or a disturbance of mental function? If so, does that impairment or disturbance mean that the person is unable to make the decision in question at the time it needs to be made? To have capacity to make a decision, someone must be able to: Understand the information relevant to the decision. Retain the information. Use that information as part of the process of making the decision. Communicate his/her decision either by talking, signing, or any other means. Informed choice and effective communication Choices can only be made if people have information. If they know the options, the risks and possible implications they can make the choice that is right for them. This is ‘informed’ choice. The kinds of support people with dementia may need include: making sure their hearing aid is working, or they have their glasses on explaining things in a way that is easy to understand The kinds of support people with dementia may need include: using pictures, for example when choosing what meal to have having someone who can speak the person's own language to explain the decision to them choosing the best time of the day to talk about the decision. The kinds of support people with dementia may need include: Some decisions are very difficult and people may need time to make them. People might also change their mind several times. This doesn't mean they can't make the decision themselves. The importance of consent Obtaining the patient’s consent is usually a prerequisite of any clinical intervention. However, some cognitively impaired patients may not be able to give valid consent. Following years of consultation and legislative review, the Mental Capacity Act provides a statutory framework of ‘best interests’ decision- making on behalf of incapacitated individuals. This principle is upheld in law and means that medical interventions will generally be unlawful in the absence of the patient’s consent, regardless of how unwise or unjustified the patient’s decision may appear.  Independent Mental Capacity Advocates The Mental Capacity Act provides that an Independent Mental Capacity Advocate must be instructed to represent a person who lacks the requisite capacity, when it is proposed that the person should receive “serious medical treatment” or be provided with long-term accommodation in a hospital or residential care by local authority.  Independent Mental Capacity Advocates The duty to instruct an Independent Mental Capacity Advocate applies if there is no person (other than a professional or paid carer who can be consulted in determining the person’s best interests. Independent Mental Capacity Advocates have prescribed statutory functions, including gathering evidence and preparing a report on the person’s best interests.  ”Best interests” The best interests principle of the Mental Capacity Act promotes a holistic view of a person’s life, and lays out a process to help a ‘lead’ decision- maker to make a decision, taking into account what the individual lacking capacity would have wanted, if they had been able to make their own decision.  Surrogate decision making As dementia progresses, many people will reach a stage where they are no longer able to make decisions for themselves. At this point, decisions about lifestyle, healthcare, medical treatments and end-of-life care become the responsibility of someone else—referred to as a substitute, proxy or surrogate decision-maker (SDM). There are many ethical issues for family members and others, not least of which is how to negotiate the complexities of decision- making in a way that supports the person’s right to make autonomous choices and promotes their quality of life.  Lasting power of attorney ❑Adults can give someone else the power to make decisions about their money and property. This is called making a Lasting Power of Attorney (property and affairs). ❑Lasting powers of attorney (LPAs) let you choose a person (or people) you trust to act for you. This person is referred to as your ‘attorney’, and you can choose what decisions they are allowed to make for you.  Solicitors who advise clients on drawing up a lasting power of attorney (LPA), and solicitors who are acting as an attorney under an LPA. Any solicitor intending to give advice about an LPA or act as an attorney under an LPA must be aware of the provisions in the Mental Capacity Act 2005 and the Mental Capacity Act 2005 Code of Practice (Code of Practice).  Solicitors should also be familiar with the relevant guidance produced by the Office of the Public Guardian  Advance decisions An advance decision (sometimes known as an advance decision to refuse treatment, an ADRT, or a living will) is a decision you can make now to refuse a specific type of treatment at some time in the future. An advance decision is only legally binding as long as it complies with the Mental Capacity Act , and meets a number of specific conditions.  Advance decisions It lets your family, carers and health professionals know whether you want to refuse specific treatments in the future. This means they will know your wishes if you are unable to make or communicate those decisions yourself.  Abuse and neglect Physical elder abuse ❑ Physical elder abuse is non-accidental use of force against an elderly person that results in physical pain, injury, or impairment. ❑ Such abuse includes not only physical assaults such as hitting or shoving but the inappropriate use of drugs, restraints, or confinement. ❑Elder neglect—failure to fulfill a caretaking obligation— constitutes more than half of all reported cases of elder abuse. ❑It can be intentional or unintentional, based on factors such as ignorance or denial that an elderly charge needs as much care as he or she does. Deprivation of liberty safeguards (DoLS) A deprivation of liberty occurs when: ‘The person is under continuous supervision and control and is not free to leave, and the person lacks capacity to consent to these arrangements.’ The key elements of these safeguards are: ❑to provide the person with a representative – a person who is given certain rights and who should look out for and monitor the person receiving care ❑to give the person (or their representative) the right to challenge a deprivation of liberty through the Court of Protection ❑to provide a mechanism for a deprivation of liberty to be ❑reviewed and monitored regularly The key elements of these safeguards are: The Deprivation of Liberty Safeguards can only be used if the person will be deprived of their liberty in a care home or hospital. In other settings the Court of Protection can authorise a deprivation of liberty. UN Convention on the rights of persons with disabilities ❑The UN Convention on the Rights of Persons with Disabilities was ratified by the United Kingdom in 2009. ❑The Convention’s purpose is to protect the rights of people who have long-term physical, mental, intellectual, or sensory impairments. Advance care planning (ACP) ❑ Advance care planning is the process whereby patients, in consultation with healthcare professionals, family members, and other loved ones, make individual decisions about their future healthcare, to prepare for future medical treatment decisions. With the individual’s agreement, discussions should be: ❑ documented ❑ regularly reviewed ❑ communicated to key persons involved in their care. ❑ If the individual wishes, their family and friends may be included. Do not attempt resuscitation There are three main circumstances that DNR decisions to be made: ❑Where a patient, with capacity, asks not to be resuscitated. ✓This must be respected and a DNR order implemented to alert all healthcare professionals not to attempt resuscitation. ✓A patient can request a DNR order at any time. ❑Where a doctor considers that resuscitation is likely to be “futile”, i.e. in their medical opinion, CPR will not work. ❑Where a doctor considers, having had full consultation with the patient, that the burden of CPR outweighs the benefit to the patient, i.e. that CPR may restart the heart and breathing, but the patient is likely to be left with a poor quality of life (a benefit v burden test).  Assisted suicide and euthanasia Euthanasia is the act of deliberately ending a person's life to relieve suffering. For example, a doctor who gives a patient with terminal cancer an overdose of muscle relaxants to end their life would be considered to have carried out euthanasia.  Assisted suicide and euthanasia Assisted suicide is the act of deliberately assisting or encouraging another person to kill themselves. If a relative of a person with a terminal illness were to obtain powerful sedatives, knowing that the person intended to take an overdose of sedatives to kill themselves, they may be considered to be assisting suicide.  Both active euthanasia and assisted suicide are illegal under Philippine law. Depending on the circumstances, euthanasia is regarded as either manslaughter or murder and is punishable by law, with a maximum penalty of up to life imprisonment.  Assisted suicide is illegal under the terms of the Suicide Act (1961) and is punishable by up to 14 years' imprisonment. Attempting to kill yourself is not a criminal act in itself. LOSS & GRIEFF ❑ Primary Losses ✓Loss of people close to them – spouses, children, parents, siblings ❑Secondary Losses ✓Are those resulting from the primary Loss companionship, roles the deceased assume in relationship and independence  Grief ❑ is the natural and normal loss of any kind and is experienced psychologically, behaviorally, socially and physically. It involves changes over time  Mourning ❑ is the cultural and/or public display of grief through one’s behaviors. ❑These include accepting the reality of loss, reacting to separation, and finding ways to channel reactions, handling the unfinished business, and transferring the attachment to the deceased from physical presence to symbolic interaction. COMPONENTS OF PEACEFUL DYING ❑“The key to peaceful dying is achieving the components of peaceful living during the time you have left” (Preston, 2000) ❑ Instilling good memories ❑ Uniting with family and medical staff ❑ Avoiding suffering, with relief of pain and other symptoms ❑ Maintaining alertness, control, privacy, dignity and support ❑ Becoming spiritually ready ❑ Saying goodbye ❑ Dying quietly  GOOD DEATH ❑ Is possible and can be facilitated by the nurse who advocates for and works to ensure that the patients, families, and caregivers are free from avoidable distress and suffering, that the process is in accord with the wishes of the patient, family, and that is consistent with clinical, cultural, and ethical standards.  In pronouncing death, it is customary to identify the patient and note the following; ✓General appearance of the body ✓Lack of reaction to verbal or tactile stimulation ✓Lack of pupillary light reflex (pupils fixed and dilated) ✓Absent breathing and lung sounds ✓Absent carotid and apical pulses (listening for apical pulse is full minute)  PHYSICAL CARE OF THE BODY IS AN IMPORTANT NURSING FUNCTION ✓Careful and gentle handling of the body communicates care and concern on the part of the nurse ✓Rituals and customs should have been identified before the death, to be incorporated into the care, reflecting the patient/family wishes ✓Nursing care also includes removal of drains, tubes, IVs and other devices ❑The Nurse’s gratification does not come from caring, but rather from supporting the patient in a peaceful and dignified “ good death”.  POSTMORTEM CARE Pronouncing Death ❖ Pronouncing the death of the person varies from state to state and institution to institution, nurses may pronounce the death, in some may not be allowed Policies differ and individual institutional polices are followed