NURSE-UN 1243 Adult and Elder Nursing 3 Week 8
Caring for Patients with Serious Illness and End-of- Life
Objectives
● Demonstrate clinical decision
... [Show More] making based on the integration of information from multiple sources, including the patient, inter-professional team, & the best available evidence for patients with serious illness and at end-of-life.
● Advocate for high quality, safe, & culturally competent patient centered care for hospitalized patients with serious illness and at end-of-life.
Experience with Death
● Consider your own…
○ Personal experiences with death?
○ Experience with death in your family?
○ Past clinical experience with death?
What is a “Good Death”? -It's very subjective
● prepared, natural causes, time to speak to the person who is dying, keeping dignity, staying with loved ones, keeping the patient comfortable, knowing where you are in the disease process
Serious Illness
● Refers to any disease or event (such as an accident) that is unlikely to be curable and is life-limiting.
● Approximately 90 million people in America are living with a serious illness (CAPC, 2013)
● 86% of the $3 trillion in annual US healthcare expenditures is spent on meeting challenges of chronic disease (CDC, 2016)
● Little attention and financial support has gone to maintaining or enhancing quality of life for these patients with chronic, serious illness (IOM, 2012).
Talking About Serious Illness
● Assessment first!
o “What is your understanding of your illness?”
● Open ended questions
o “What are you most concerned about?” - family, children, unfinished business
● Reflecting/Validating:
o “It seems like…”
● Therapeutic Use of Silence - and listen You don’t have to have all the answers!
Palliative Care :Symptom management of a chronic condition. Could also get treatment for cureative conditions.
● Patient-and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.
● Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.
The Palliative Care Team
● Has become an essential component of quality care in hospitals across the US.
● Currently, 90% of hospitals with more than 300 beds and 96% of teaching hospital have palliative care teams (CAPC, 2015)
● Your role as a nurse is to advocate for patient access to the team and work with the team to develop a plan of care that is consistent with the patient’s
wishes.
● assess what the patient needs and what are their wishes
Palliative vs comfort care
comfort care is a lay term (not an official term)
palliative care= symptom management of a chronic or terminal illness (can be on this for many years); can be getting treatment for curative care
Hospice (estimated life expectancy of 6 months or less)
● more a service than a place; end of life
● A model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes.
● Support is provided to the patient's loved ones as well.
● At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.
● https://www.nhpco.org/about/hospice-care
● Under the Medicare Hospice Benefit, patients sign off their Medicare Part A—they chose to receive hospice care rather than disease-modifying treatments.
● Hospice care focuses on caring not curing.
● focus for hospice care is comfort and pain management
o **Test tip: ABCs are not a priority for hospice care; priority is comfort and pain management
o must have a life expectancy of less than 6 months, no longer pursuing curative treatments, need 2 provider signatures, can withdraw from hospice if needed.
o In hospice care, you can treat conditions outside terminal d/x (i.e. UTI w/antibiotics)
o reasoning behind coming off hospice or rescinding the DNR/DNI= pt autonomy or a new treatment/clinical trial comes out and can be curative
o AUTONOMY TRUMPS ALL OTHER ETHICAL PRINCIPLES*
Hospice vs. Palliative Care Need to know this slide*** Hospice
● Regulated by CMS (Center of medicare and medicaid services) and is limited to care that occurs in the last six months of life
● Medicare Hospice Benefit is provided by Medicare hospice certified agency
● Hospice is usually delivered wherever the patient calls “home” Palliative care
● Palliative care can be offered at anytime in the disease trajectory, and, should be part of care at the time of a serious diagnosis
● Palliative care services can be paid for by philanthropy, fee-for service, or hospital support. Reimbursement is low.
● Palliative care can occur in any clinical setting Case Study: Mrs. C
Mrs. C is a 67 year old female receiving primary and palliative care for her severe COPD. Her dyspnea has been fairly well controlled on her inhalers. She sees a palliative care NP and her pulmonologist. In the past few weeks, she has made 2 trips to the ED for breathlessness. She has refused hospitalization, stating “I am tired of this and I never want to go the hospital again”. Mrs. C’s serious illness is worsening.
Do you think Mrs. C maybe a candidate for hospice? Why or why not?
● life expectancy--not less than 6 months -- not a hospice candidate
● another service she can use: palliative care
What can you do for her:
● changes in lifestyles
● DNH= do not hospitalize/ MOLST
● assess and educate her on what DNR/DNI, refusing hospital means
● can she care for herself at home
● living will, health care proxy
● know what forms she is signing
Palliative Care Model
life prolonging care (acute setting) overlap with palliative → hospice care → bereavement for family
Bereavement → grief period affecting family postmortem
Advanced Care Planning
● Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care
o Health/treatment plan patient consents prior to them losing ability to do so from worsening condition.
Regardless of the clinical scenario, 1. ACP should be proactive
2. Appropriately timed - not in middle of crisis
3. Integrated into routine care
4. Revisited every time a person’s medical condition changes--when worsen
Advanced Care Planning
Capacity
● Assessing decision making capacity – psychological ability to make rational decisions
● Determined by physician
o They don't make the decision for you
● No “gold standard”
● General standards:
o The ability to communicate — can they respond
o The ability to understand the proposed treatment and alternative interventions
o The ability to grasp the consequences of accepting and of declining the suggested treatment.
o The ability to reason
Competency
● Mental ability and cognitive capabilities required to execute a legally recognized act rationally
● Legal decision decided by court
● Much broader - ability to enter into a contract, to prepare a will, to stand trial, to make medical decisions
● If declared “incompetent” a guardian is appointed – ie mental retardation, autism i.e. Britney Spears
ACP - **Capacity is determined by the HCP; competency is determined by the court
Advanced Directives- (LEGALLY BINDING) a written statement of a person's wishes regarding medical treatment, often including a living will, made to ensure those wishes are carried out should the person be unable to communicate them to a doctor.
hospice can help with ADL, more advanced directives
● Durable Power of Attorney for Health Care in NY (Health Care Proxy)
● Living Will (Treatment Preferences) many ppl don’t have one until in hospital o DNR (Do Not Resuscitate)
o DNI (Do Not Intubate)
o AND (Allow Natural Death)
o DNH (Do Not Hospitalize)
o Artificial Hydration & Nutrition
o Dialysis, Antibiotics, Re-Hospitalization
Advanced Directives
MOLST medical orders for life sustaining treatments - dos and don’ts
FIVE WISHES
considered a living will with a heart and soul
Five Wishes is a United States advance directive created by the non-profit organization Aging with Dignity. It has been described as the "living will with a heart and soul".[1]
The Five Wishes
Wishes 1 and 2 are both legal documents. Once signed, they meet the legal requirements for an advance directive in the states listed below. Wishes 3, 4, and 5 are unique to Five Wishes, in that they address matters of comfort, care, spirituality, forgiveness, and final wishes.
Wish 1: The Person I Want to Make Care Decisions for Me When I Can't[edit]
This section is an assignment of a health care agent (also called proxy, surrogate, representative, or health care power of attorney). This person makes medical decisions on your behalf if you are unable to speak for yourself.
Wish 2: The Kind of Medical Treatment I Want or Don't Want[edit]
This section is a living will—a definition of what life support treatment means to you, and when you would and would not want it.
Wish 3: How Comfortable I Want to Be[edit]
This section addresses matters of comfort care—what type of pain management you would like, personal grooming and bathing instructions, and whether you would like to know about options for hospice care, among others.
Wish 4: How I Want People to Treat Me[edit]
This section speaks to personal matters, such as whether you would like to be at home and whether you would like someone to pray at your bedside.
Wish 5: What I Want My Loved Ones to Know[edit]
This section deals with matters of forgiveness, how you wish to be remembered, and final wishes regarding funeral or memorial plans
DNR Orders
● DNR is a medical order for life-saving treatment hospital and long term facilities
● By law, health care providers must initiate CPR for a person who is not breathing or pulseless unless DNR exists
● Travels with patient (portable DNR) some may have DNR bracelet/necklace, MOLST form on fridge → this was an exam by Dr Fasolka where EMTs saw it for a patient in cardiac arrest at home, form may say EMS shouldn’t give life sustaining treatment at home
● Major problems:
○ Unclear variations
○ Can be perceived by family members to mean that they have been given permission to end patient’s life
Case Study: John Doe
An unconscious 70-year-old man with a history of chronic obstructive pulmonary disease, diabetes mellitus, and atrial fibrillation to the emergency department, where he was found to have an elevated blood alcohol level. The staff of the medical intensive care unit evaluated him several hours later when hypotension and an anion-gap metabolic acidosis with a pH of 6.81 developed. His anterior chest had a tattoo that read “Do Not Resuscitate,” accompanied by his presumed signature. Because he presented without
identification or family, the social work department was called to assist in contacting next of kin.
All efforts at treating reversible causes of his decreased level of consciousness failed to produce a mental status adequate for discussing goals of care.
Depends on state laws, but in general and legally, need documentation for
DNR--tattoos/bracelet don’t count, should prompt you to ask whether they have MOLST
Case Study: John Doe
Discussion Questions:
1. Do we honor the tattoo? - No
2. What burden fell on the healthcare team because no advance directives or patient wishes were documented? - To determine the appropriate legal and ethic approach to care - unclear variations/beneficence
3. Does your state have a statute defining surrogacy for incapacitated patients?
4. Is there a state mandate for guardianship in cases such as this?
5. What ethical principles did the physician employ to make a medical decision? - beneficence (ethical principle they would use)
6. Discuss the systematic approach a team should follow in a case like this as well as what other departments may be helpful in a case such as this. - They would contact the ethical hospital team.
Case Study: Mr. W
Mr. W. has a history of polysubstance abuse, cirrhosis, AIDS, and he is homeless. He is admitted to the hospital with fever and chest pain, and found to have aortic endocarditis. On admission he identifies a "lady friend" as his only family. His condition deteriorates despite aggressive treatment and he develops heart and respiratory failure and is transferred to the MICU. The friend is also homeless with no phone and visits irregularly. The hospital cannot reach her to inform her about Mr. W.'s deterioration.
Mr. W. continues to decline and is receiving• maximal life support, including: norepinephrine at 30 mcg/min, mechanical ventilation with an FI02 of 1.0, and CVVHD (continuous venovenous hemodialysis). The MICU team acknowledges that Mr. W. is likely to die but cannot reach the friend to discuss treatment goals.
Case Study: Mr. W
Discussion Questions:
1. Discuss how the MICU team might proceed.
2. When continued aggressive therapy is "futile" must we share a decision about treatment with a surrogate? Why or why not?
3. Who else can assist/support the team in decisions about Mr. W.'s care?
Case Study: Jennie
Jennie M., aged 79, was admitted to the MICU from her Nursing Center. She was in septic shock secondary to a UTI and osteomyelitis from a stage IV sacral decubitus. Jennie had a history of advanced-stage Alzheimer's disease, and had been a nursing home resident for four
years. Prior to family arrival at the hospital, Jennie was treated aggressively including intubation, mechanical ventilation, vasopressors, fluid resuscitation, and admission to the MICU.
Jennie had created a written advance directive when capable, and had named her daughter Mary as her advocate (proxy). Her directive indicated "no surgery, antibiotics, dialysis, mechanical ventilator, or tube feeding." While these wishes were known by the nursing home, they were not communicated to the hospital at the time of transport.
When Mary arrived at the MICU she presented her mother's wishes, but was clearly shaken and upset to see her mother. The MICU team understood the gravity of the patient's condition and the appropriateness of shifting treatment goals from "aggressive" to "comfort-focus." Mary stated, "I just need more time."
Case Study: Jennie
Discussion Questions:
1. What is the difference between advance directives and a no code order?
2. Is it appropriate to provide a compassionate delay in withdrawing life support for the daughter's sake?
3. What can the MICU nurse do to assist the daughter with decision-making and coping?
4. How can the MICU nurse facilitate a better death for both Jennie and her family when withdrawing therapies?
Case Study: Mrs. C
Mrs. C., an 85-year-old woman with advanced-stage COPD, is found unresponsive by her husband. He calls for an ambulance. Emergency medical personnel perform endotracheal intubation and resuscitate her successfully. She then is taken to the local hospital for treatment of pneumonia and respiratory failure. After treatment for her acute conditions, she remains ventilator dependent. The patient is able to communicate her wishes by using head signals and writing notes. After several weeks of treatment, she asks that the ventilator be discontinued and she be allowed to die. Mrs. C. asserts emphatically that she would not have wanted to be resuscitated in the first place, although she never executed an advance directive or discussed these specific wishes with anyone.
Case Study: Mrs. C
Discussion Questions:
1. Is the patient's decision a rational one?
2. What factors may or may not be influencing Mrs. C.'s decision?
3. What additional assessment may be important before honoring Mrs. C.'s request?
4. Is there a legal or ethical difference between withholding and withdrawing life-sustaining treatment?
5. Mrs. C. might require an opioid to prevent or reduce respiratory distress during ventilator withdrawal. Since an opioid might cause respiratory depression is this problematic? Why or why not? •
6. Discuss why it feels different to withdraw ventilatory support from a conscious person than from an unconscious person. Are the principles the same or different?
Withdrawal of Care
Withholding/withdrawing can be ethically acceptable. Care of Patients at the End of Life
Focus shifts to quality of life
● Focus on existing or new symptoms - e.g. treating UTI with abx instead of curing/treating kidney failure
● Initiation of new measures for comfort.
● Discontinuing non-essential treatments.
- Family needs may become more pronounced
- The focus shifts from treating for curative/lengthening lives to treating symptoms and promoting good quality of life
Change in care priorities
● Life Prolonging Treatments
○ Resuscitation & Intubation
● Vital Signs
● Diagnostic tests
● Fluid and Nutrition
● Medications
- Increased focus on family!
- Support family as well
Care of Patients at the End of Life
● Barriers - patient barriers
○ Limited evidence base
○ Fear and discomfort about death
○ Lack of experience with death
○ Death denying culture
○ Uncertainty about communication using words like “fighting the battle against CA”
○ Financial
○ Distance from family
○ misunderstanding of the process
○ denial of d/x
● Symptom Management
○ Pain
○ Fatigue
○ Dyspnea
○ Anorexia & Cachexia
○ Nausea & Vomiting
○ Constipation
○ Depression
○ Anxiety
○ Spiritual Distress
Pain Assessment
● Pain is the symptom that people with serious illness/dying patients fear most
● Pain is multidimensional
○ Physical (nerve pain)
○ Psychological
○ Social (not being able to see anyone, ex: covid times)
○ Spiritual (can be used when faced with death)
● subjective to where the pain is, what the patient says it is
● Kubler Ross STAGES OF GRIEF
Pain Management
● Schedule pain medications to prevent recurrence of pain
○ Idea is not to chase the pain, but keep it in check and from arising. Preemptive approach
○ Pt. with chronic pain -- treat with scheduled around the clock dose
○ Pt. with breakthrough pain -- treat with PRN dose
● Consider alternative administration route of pain medication as needed
○ If dysphagic → IM/IV/SQ/patch/etc
○ In the home setting, placing an IV is not practical BUT injection opioid is easier to administer. Hospital setting, IV is more practical
● Use an inter-professional team approach
● Medications
○ Non-opioids NSAID, acetaminophen
○ Opioids MAIN-- not concerned about addiction and respiratory depression, manage constipation, foggy feeling lasts only a few days
○ Adjuvants- nerve irritation (nerve blocks), tricyclic antidepressants
● Alternative Therapies marijuana, heat/cold, reiki, massage
Fatigue Management
● Transfusion not necessarily administered for anemia but more so for the management of fatigue
Dyspnea Management
Dyspnea Management (Nonpharmacologic)
● Cool air--provide fan
● Wet cloths to the face
● Positioning to facilitate chest expansion high fowler--breathe easier
● Frequent rest periods
● Encouraging imagery and deep breathing pursed lip breathing--long exhale
● Relax environment, soothing musics
Dyspnea Management (Pharmacologic)
• Opioids morphine (GOLD STANDARD)--reduce anxiety and distress and air hunger (starvation for air)
• Anticholinergics (scopolamine or glycopyrrolate) - salvation may worsen dyspnea
• scopolamine is an antiemetic for motion sickness; usually a patch behind the ear. The anticholinergic effect of dry mouth is used here to decrease secretions. Dry mouth is beneficial for EOL patients.
• Bronchodilators (albuterol)
• Sedatives (lorazepam)
• Corticosteroids--reduce inflammation
• Oxygen therapy (very humidified)
• Diuretics (as needed) if they have heart failure
• antibiotics (for symptoms)--may have respiratory infection, UTI Anorexia/Cachexia
Should we give nutrition and fluids?
Enteral nutrition is questioned in EOL care → due to side effects: nausea, vomit, diarrhea. May defeat the purpose of comfort. Is an ethical dilemma
Discomfort
Nausea & Vomiting Management
● Antiemetic agents
○ Prochlorperazine (Compazine)
○ Ondansetron (zofran) don’t need to worry about a prolonged QT interval associated with zofran at end of life care bc we are providing comfort
○ Dexamethasone (Decadron, Deronil) - steroid (can be combined with antiemetics for nausea/vomiting) - used with zofran
○ Metoclopramide (Reglan, Maxeran)
● Remove any source of odors
● Comfortable room temperature
● if can safely swallow, can give food
Interventions for Providing Psychosocial Support
● Presence
○ anticipatory grieving may cause family to withdraw--avoidance may lead to regrets later
● Life review
○ reflection/memories/looking at photo albums
● Reminiscence
● Spirituality → Questions such as:
○ Rituals, postmortem care, what are your beliefs/religion, can I bring someone from your faith, etc.
● Religion
Cultural influences on EOL Care
● Communication
○ silence, openness
● Medical Decision-making
● Pain - some view it as weakness to receive pain med
● Food & Nutrition
● Degree of Aggressive Care
● Death Rituals - family bathe the pt
A Good Death
Patient-Centered Care for the Dying
Hope
hope can be as simple as wanting to be alert until my family gets here End of Life Ethical Issues
● Two Common Ethical Issues
○ Artificial Nutrition/Hydration
■ Fear loved one will “starve” or be thirsty
■ Food, hydration is seen as a basic requirement for life
● evidence to support artificial nutrition/hydration can cause more discomfort for the patient and not change the outcome.
● Tube feeds usually cause diarrhea leading to more discomfort
○ Analgesic Use
■ Fear that opioids will hasten death- not the case - opioids don’t hasten death
Brief Ethics Scenarios
Mrs. Smith is a 78-year-old woman who was admitted six days ago to a medical-surgical unit with a CVA and has experienced severe neurological deficits and a MI. Her daughter, who is her Durable Power of Attorney for Health Care has provided a copy of Mrs. Smith's advance directive indicating that she requests DNR. It is 9 pm and Mrs. Smith's daughter has gone home for the evening, when her son arrives from out of state. The son approaches the nurse and says, "I don't know what my idiot sister is thinking. You better get my mother to the ICU and turn this mess around. My mother has a lot of years left, and by God, I'm not going to stand here and let her die." How do you respond?
- educate the son on the mother’s wishes
- you could ask the son what he knows about the condition
- Would not move to ICU → looking at autonomy i.e. advance directive decision patient made.
- Can provide education to the son to help family cope; could educate what a DNR is
- we have to ethically follow the patient’s autonomy - you are legally bound to this*
Brief Ethics Scenarios
A new graduate nurse, Sarah, begins work in the Emergency Room and develops a good relationship with her preceptor/mentor Joe, an ER nurse for over 20 years. One day as Sarah and Joe are leaving the hospital after a difficult shift, Sarah confides that she was relieved, as an elderly patient with cancer was admitted by ambulance today. The patient had metastatic cancer and near death, but that because he had an advance directive, they did not attempt resuscitation. Her mentor, Joe, “doesn’t believe in that DNR crap" and that as an ER nurse, he intends to make everyone a full code. He says that if somebody else, "lets them die" later, that's OK, but he is an ER nurse, "not a hospice nurse," and will do "what he's trained to do." What should the nurse do?
- Joe is in the wrong, despite his experience and tenure
- talk to him about the legal implications
- it’s not his choice to make
- talk to a supervisor/manager/report him
- that is considered battery and a violation of their consent
Brief Ethics Scenarios
Mr. Butler is a hospice patient living in an adult living facility. He has a living will expressing his desire to not have any further emergency interventions. The patient experiences a medical crisis, and the staff calls the Emergency Response System. The patient is transported to the hospital emergency room and then to the ICU. As the ICU night nurse, as you are reviewing his chart, you notice that he has a living will expressing not to have further emergency intervention. What should you do?
- talk to the nurse manager
- talk to the family and the NP/MD/PA on call for the shift
- contact ethics committee
Care of the Actively Dying Patient
● Common Symptoms
○ Pain
○ Dyspnea
○ Increased Secretions and Death rattle a distinctive sound that a person may make as they are coming to the end of their life and may no longer be able to
swallow or cough effectively enough to clear their saliva. While a death rattle can be difficult to hear, it does not usually cause pain or discomfort to the individual.
○ Confusion
○ Delirium/hallucination
○ Incontinence can use a condom cath/foley/pads
○ Nausea/vomiting
○ Agitation
○ Constipation
● Emotional/Spiritual
○ Symptoms:
○ Withdrawal
○ Letting Go: Restlessness
○ Visions
○ Saying Goodbye
■ Forgive me
■ I forgive you
■ Thank you
■ I love you
■ Goodbye
○ limit disruptions during this time
Signs of Imminent Death
Not all symptoms will occur with each patient and the sequence of events will be unique. The nurse needs to teach the family and loved ones what to expect as death is near.
● Changes in vital signs and breathing (decreased respirations, periods of apnea, bradycardia, very low blood pressure, low temperature) -- initially RR is high and tachy but as death approaches closer the vital signs lower
● Cold & mottled extremities
● Decreased urine output
● Delirium
● Restlessness can be calm if interventions are calming
● waxy appearance to the skin
Common Issues in the Last Hours of Life
● Needs
○ Labored Breathing--morphine gold standard
○ Noisy Respirations - death rattle or secretions=scopolamine (anticholinergic)
○ Decreased PO Intake--AVOID IVs -chapstick for lip moisture, wet sponges
○ Agitation (address the causes, palliative sedation)
● Interventions
○ Oxygen, Opioids, Fan
○ Positioning 90 degrees, Anticholinergics
○ no deep suction causes discomfort and gagging, family education
○ Avoid IVs, Replace feeding with other care activities, oral care
○ Address causes (i.e. pain, urine retention) palliative sedation, anti-psychotics
Providing Support
Time of Death/After Death
● Pronunciation of Death -some states nurses are allowed to. In others, physicians do
● Provide sympathy, support, education for the family/loved ones
● may need to do a post mortem assessment/autopsy on the body if it is an unusual/unknown cause of death
● Postmortem Care
○ Removal of tubes equipment (except if cultural rules prohibit or if medical examiner involved)
○ Bathing, dressing, positioning (dignity and respect)
○ close the patient’s eyes
○ Position body in proper alignment with dentures in place
○ Place dressings on any leaking wounds
○ Apply padding for incontinence
○ Transfer
○ Allow time for the family to be with the patient or help out with the care
‘
Nursing Self-Care [Show Less]