Unit 6: Palliative Online Courses

(4 types of complicated grief) - *normal* grief reaction but *doesn't subside*/*continues for long time* aka _______________ grief - *normal* grief reactions that are *suppressed/postponed* and the survivor *avoids the pain of the loss* aka _________________ grief - *intense reaction* that may include nightmares, delinquent behaviors, phobias, suicidal thoughts. aka _________________ grief - when survivors *aren't aware* that their behaviors interfere with normal functioning (cancelling lunch to go to cemetery every day). aka ______________ grief

(4 types of complicated grief) - *normal* grief reaction but *doesn't subside*/*continues for long time* aka *CHRONIC* grief - *normal* grief reactions that are *suppressed/postponed* and the survivor *avoids the pain of the loss* aka *DELAYED* grief - *intense reaction* that may include nightmares, delinquent behaviors, phobias, suicidal thoughts. aka *EXAGGERATED* grief - when survivors *aren't aware* that their behaviors interfere with normal functioning (cancelling lunch to go to cemetery every day). aka *MASKED* grief

(Grief interventions) Provide a ____________ space for the patient and family. When offering to help, state something _______________ rather than general Encourage grieving individuals to express their ______________ Encourage _____________ review and reminiscing

(Grief interventions) Provide a *private* space for the patient and family. When offering to help, state something *specific* rather than general Encourage grieving individuals to express their *feelings/emotions* Encourage*Life review* and reminiscing

(Grieving interventions) Provide ________ support as appropriate. Honor _______ practices Send _____________ to bereaved Attend the ___________ after the patient death Make a supportive _________ to the bereaved

(Grieving interventions) Provide *spiritual/religious support* as appropriate. Honor *cultural/religious* practices Send *cards/notes* to bereaved Attend the *funeral/memorial* after the patient death Make a supportive *phone-call* to the bereaved

Instead of saying *"I'm sorry"* to the patient, whats a better type of statement?

*"I Wish..."* statements It denotes empathy but also shows limitations in treatment

(types of grief) Begins *after death* of a loved one and includes *separation response* and *response to stress*. May be confused, uncertain about their identity or social role. May disengage from usual activity or experience disbelief/shock

*Acute* grief

(types of grief) grief which occurs *before a loss*, associated with diagnosis of an acute, chronic or terminal illness. Experienced by the patient, family, caregivers.

*Anticipatory* grief

*Burnout* is... *Compassion Fatigue* is...

*Burnout* is...feelings of hopelessness, stress of being overworked, and lack of support or appreciation. *it occurs over a period of time* *Compassion Fatigue* is...the result of *secondary exposure to traumatic events, such as multiple patient deaths.*

_________________ is an emotional and physical burden created by the *trauma of helping others in distress or who are suffering* which leads to a reduced capacity for empathy toward suffering in the future. While, __________________ is overall emotional and physical exhaustion; depersonalization, or feelings of cynicism and detachment from one's job.

*COMPASSION FATIGUE* is an emotional and physical burden created by the *trauma of helping others in distress or who are suffering* which leads to a reduced capacity for empathy toward suffering in the future. While, *BURNOUT* is overall emotional and physical exhaustion; depersonalization, or feelings of cynicism and detachment from one's job.

(types of grief) Affects 2-3% of worlds pop. Factors that contribute to this grief are *lack of support network*, *concurrent losses*, *poor coping skills*, *loneliness*

*Complicated* grief

(types of grief) described as *any loss that is not validated* or *recognized*. society may not want to acknowledge the grief, and doesn't know how to deal with the loss. Those experiencing this grief don't feel freedom to share or openly acknowledge it. (ex: ex lovers, partners of AIDS patients, mothersof stillbirths etc)

*Disenfranchised* grief

WHen a patient is experiencing "total pain" its important to assess their _______________ state

*Emotional* state: Depression, fear, anxiety, hopelessness etc.

(Barriers to pain management) Dr. S prefers not to prescribe opioids to his patients with lung cancer because he's afraid they will stop breathing.

*Healthcare Professional* Barriers

(Barriers to pain management) Tom went to get his pain medication prescription filled but will have to wait three days for the pharmacy to get it in

*Healthcare System* barrier

(Barriers to pain management) Mr. M lives in an area of the city with few pharmacies.

*Healthcare system* barrier

A patient just got bad news... You need to really avoid saying *"I'm _______________"*

*I'm Sorry* It feels shallow, it makes you seem aloof, you may be misinterpreted as taking responsibility for any negative outcomes.

(types of grief) Described as the *usual feelings, behaviors and reactions to a loss*. Can be physical, emotional, cognitive, behavioral.

*Normal* grief

(Barriers to pain management) Mrs. J does not want her husband to take pain medications because she has heard they are addicting

*Patient/Family* Barrier

(Barriers to pain management) Mrs. T, age 84, says "I won't take pain medications because they make me constipated"

*Patient/Family* Barrier

(Barriers to pain management) Joan's insurance denied coverage for her newly prescribed medication for her neuropathy

*healthcare system* barrier

When medications (such as barbiturates) are prescribed by physicians to *induce a coma* with the *intent of alleviating pain* This keeps the patient unconscious who would otherwise be painful when nearing their natural death. _________________ sedation

*terminal sedation*

How does a patient get a prescription from a participating physician?

1) The patient must make *two oral requests to the attending physician, separated by at least 15 days.* 2) The patient must provide a *written request to the attending physician*, *signed in the presence of two witnesses*, at least *one of whom is not related to the patient*. 3) The *attending physician and a consulting physician must confirm the patient's diagnosis and prognosis* 4) The attending physician and a consulting physician *must determine whether the patient is capable of making and communicating health care decisions for him/herself*. 5) *If either physician believes the patient's judgment is impaired by a psychiatric or psychological disorder* (such as depression), the patient must be *referred for a psychological examination*. 6) The attending physician must *inform the patient* of *feasible alternatives* to the Act including *comfort care, hospice care, and pain control* 7) The attending physician *must request, but may not require*, the patient to *notify their next-of kin of the prescription request*. A patient can rescind a request at any time and in any manner. The attending physician will also offer the patient an opportunity to rescind his/her request at the end of the 15-day waiting period following the initial request to participate. Physicians must report all prescriptions for lethal medications to the Oregon Health Authority, Vital Records. As of 1999, pharmacists must be informed of the prescribed medication's ultima

In advanced diseases, *An_________* and *Cach___________* are often found

Anorexia & Cachexia (lack of nutrition and wasting of muscle and fat)

Who is palliative care for?

Anyone with a serious illness, *regardless of age*

Why do hospitals absorb palliative care costs generally?

Because in the long run its cheaper than paying to keep someone alive or to pay for treatments.

defined as a period of grief and mourning that occurs after loss

Bereavement

What demographic of patients are often under treated for pain due to fears of addiction, the belief that they do not perceive pain the same way, or inappropriate knowledge of pharmacological interventions

CHITLINS

Grandparents, parents, siblings, aunts, uncles, extended family, neighbors, classmates, teammates, friends All of these people can be affected (and grieve) by the death of a

Child (it takes a village to raise a child, and it takes a village to mourn the death of one)

Children may be limited in their ability to _______________ and describe their feelings or grief. Children's cognitive development may interfere with their ability to __________________ the irreversibility, universality and inevitability of death So Assess them always, and base it on their cognitive/developmental levels

Children may be limited in their ability to *verbalize* and describe their feelings or grief. Children's cognitive development may interfere with their ability to *understand* the irreversibility, universality and inevitability of death

This disease/dying trajectory involves periodic crises and eventually death. The classic examples of this trajectory are Heart Failure and COPD. Patients steadily decline but can live for years, albeit with many acute exacerbations that often lead to hospitalization

Chronic Illness

Palliative care puts an emphasis on high quality ________________ between patients, families and healthcare providers.

Communication We want to have patient driven care, which strives to help achieve their wishes

*Co_________________* is a frequent symptom of patients at the end of life

Constipation

Acknowledging one's own biases and values and how they may affect you or your level of care for others. *Cultural _______________*

Cultural humility

What language would you prefer to speak? DO you have any foods you would especially enjoy or would like to avoid? Do you have a preference for Male or Female caregiver? These are questions concerning ______________ competent care

Culturally

*____________________ loss* is a succession of losses experienced by nurses who work with patients with life threatening illnesses and their families, often on a daily basis.

Cumulative Loss

The death with dignity act requires: 1)* 18 years of age or older* 2) a *resident of Oregon* 3) *capable of making and communicating health care decisions for him/herself* 4) *diagnosed with a terminal illness* that will lead to death *within six (6) months*. *It is up to the attending physician* to determine whether these criteria have been met.

Death With Dignity Act

We need to asses *fatigue* just like we assess *pain*.. we should also assess *Dys__________* similarly: (severity scale, improved/worsened by, compounding physical problems, anxiety, effect on ADL/sleep etc)

Dyspnea

A distressing, persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion that is disproportional to recent activity and interferes with usual function

FATIGUE

For parents, the death of a child is often described as one of life's most devastating experiences. However, grief is seldom acknowledged for the _______________, who may experience the grief "two fold"

For parents, the death of a child is often described as one of life's most devastating experiences. However, grief is seldom acknowledged for the *grandparents*, who may experience the grief "two fold" They experience the grief of losing heir grandchild, but they also witness their own child's grief

This set includes the ELNEC modules 1, 2, 3, 4,5 (not 6). Plus the Death With DIgnity Act reading. Only required to complete 1, 2 & 5.. and read over DWDA reading. From moodle: "Pay special attention to the *communication techniques and strategies* in 2 and 5"

GIT IT!

(Attentive Listening) *Be silent!*, never say *"I understand"* as you simply can't. *Do not change the subject* even if its difficult. *avoid giving advice unless asked* and *encourage reminiscing*

Gotcha

Defined as the emotional response to loss Individualized feelings and responses made to real, perceived, or anticipated loss.

Grief

- One's own fears of mortality - Lack of personal experience surrounding mortality - General insensitivity - Sense of guilt/failure - Desire to support sense of hope (even if false) - Disagreement with choices of patient/family - Lack of cultural knowledge - Personal grief issues - Ethical concerns These are all barriers to communication for the ___________-

Healthcare professional

This type of care is regulated by CMS and is limited to care that occurs only in the *last 6 months* of life. Usually *delivered wherever the patient calls "home"*

Hospice

With this type of care, the patient, once enrolled, no longer receives other disease-modifying treatments

Hospice

In the past, healthcare workers such as nurses were told to *control emotions* and to *emotionally distance themselves* from patients and families. However, patients at the end of their lives require intense interpersonal involvement and _________________ care.

In the past, healthcare workers such as nurses were told to *control emotions* and to *emotionally distance themselves* from patients and families. However, patients at the end of their lives require intense interpersonal involvement and *compassionate* care.

Basically, don't tell someone who's grieving the loss of a loved one anything that : - *negates their feelings*, - implies that you *know how they feel* - tells them it was *god's plan* -That they *should be over it by now* - how lucky they were for the time they did have - etc

Just don't be a heartless dick

Kids and older adults are at risk for poor pain management. So are patients who are *non-________*, patients with a history of *______________ abuse* (require more), patients who don't have *_____________*($!), and patients who don't speak *_______________*

Kids and older adults are at risk for poor pain management. So are patients who are *non-verbal*, patients with a history of *substance abuse* (require more), patients who don't have *insurance*($!), and patients who don't speak *English*

Something *meaningful left behind by the deceased* Memory making, mementos, etc.

Legacy Work

Defined as the "absence of possession or future possession, with the response of grief and mourning"

Loss

This involves being *non-verbally present* while also being *attentive*, *in the moment*, *non-judgmental* and *empathetic* *__________________ Presence*

Mindful Presence

Defined as the outward, social expression of a loss. How one outwardly expresses a loss may be dictated by cultural norms/customs

Mourning

Can someone who doesn't live in Oregon participate in the death with dignity Act?

NEIN!

is Palliative care End of Life care?

NEIN! Palliative care services are provided *concurrently* with or independent of disease modifying treatments. Its about living with a serious illness, while receiving treatment for that illness.

Is there some sort of "program" for participation in the Death With Dignity Act? Do people fill out an application to the State of Oregon or the Oregon Health Authority?

NO It is up to qualified patients and licensed physicians to implement the Act on an *individual basis*. The Act requires the Oregon Health Authority to collect information about patients who participate each year and to issue an annual report.

Should you tell someone going through grief of losing a loved one something like: *God needed your loved one* or *It was God's plan* ?

NO @sshole You don't know if this fits the persons spiritual beliefs (even if you know their religious affiliation) Even if it does fit, they may not get to this level of acceptance for quite some time.

Should you tell someone grieving the loss of a loved one *I know what you're going through* or *I know how you feel* or *I understand how hard this is* ?

NO mang, its *impossible* to know what someone else is going through. Each and every loss is *unique*

When speaking with a child about the death of a loved one, should you use words like "passed away" or "gone to sleep" etc?

NO, use the word *death*

This type of pain is generally due to damage to the nervous system

Neuropathic pain

Does the Death WIth Dignity Act allow euthanasia?

No!. Euthanasia is a different procedure for hastening death. In euthanasia, a *doctor injects a patient with a lethal dosage of medication*. In the Act, a *physician prescribes a lethal dose of medication* to a patient, *but the patient - not the doctor - administers the medication*. Euthanasia is illegal in every state in the union, including Oregon

This type of pain is related to *damage* to *bones*, *soft tissues* or *internal organs* Includes visceral and Somatic pain.

Nociceptive Pain

Assessing fatigue: - Monitor V/S - Observe ability to move about without dyspnea or nausea - Evaluate hydration level - Test muscle strength, symmetry and endurance for neuro changes - Check their medications - Check their labs

OK

Fatigue is subjective and can be assessed just like pain, by using intensity scales, origins, what relieves it etc. Treat Fatigue like Pain

OKAY!!!!

Grief assessment is ___________ throughout course of illness for the patient, family significant others, as well as the bereavement period after death

ONGOING

Children are often under treated for pain. This other demographic of patients are under treated because they are simply never assessed. They are less likely to admit they have pain. They may experience a degree of chronic pain already.

Older Adults

One of the most feared symptoms of patients with serious illness, especially cancer

Pain

Pain is not only a change in nervous system, or a physical symptom. Pain is based on _________________ experience as well as __________________ experience

Pain is not only a change in nervous system, or a physical symptom. Pain is based on *individual experience* as well as *Past experience* It is whatever they say it is

Most hospitals have a _________________ care team. Your role as a nurse is to *advocate* for patient access to this team and to work with the team to develop a plan of care consistent with patient's wishes.

Palliative

With hospice, the patient signs off their *Medicare Part A (hospital payment)* once they choose to receive hospice care. Many hospice agencies will provide home ______________ care as well in order to have a smoother transition from one to another.

Palliative

Patient (and family) centered care that optimizes quality of life by anticipating, preventing and treating suffering. This type of care addresses physical, emotional, social and spiritual needs. It facilitates patient autonomy, access to information and personal choice.

Palliative Care

This type of care can be *offered at any time in the disease trajectory*. It in fact *should be part of care at the time of initial serious diagnosis* *Can occur in any clinical setting*

Palliative Care

With this type of care, a patient can *continue to receive disease modifying treatment* along with it. This type of care can *continue through to the end of life* should the patient refuse other end of life care options and it will also address the *family bereavement processes* long after the patient dies

Palliative Care

-*Structure & Process* of Care -*Physical* Aspects of Care -*Psychological & Psychiatric* Aspects of Care - *Social* Aspects of Care - *Spiritual/Religious/Existential* Aspects of Care - *Cultural* Aspects of Care - *End of life Care* - *Ethical/Legal* Aspects of Care These are the 8 Domains of

Palliative Care (according to the National Consensus Project)

Palliative care services are paid for in the US by *Phi___________________*, *F________-For Service methods* or from *direct ______________ support* Practitioners *may* bill medicare for palliative care, but reimbursement is often *very low* Hospitals *absorb* palliative care costs because in the long run they save money by delivering it to their sickest and most vulnerable patients. (cheaper than continuing to keep them alive with all their technology)

Palliative care services are paid for in the US by *Philanthropy*, *Fee-For Service methods* or from *direct hospital support*

Past personal/professional experiences with ____________ can influence a professional healthcare worker's ability to cope with caring for dying patients and their families. For example: LTC facilities staff may be pessimistic about growing old in general

Past personal/professional experiences with *death/dying* can influence a professional healthcare worker's ability to cope with caring for dying patients and their families. For example: LTC facilities staff may be pessimistic about growing old in general

Who can give a patient a prescription under the Death With Dignity Act?

Patients who meet certain criteria can request a prescription for lethal medication from a licensed *Oregon physician*. The physician must be a Doctor of Medicine (M.D.) or Doctor of Osteopathy (D.O.) licensed to practice medicine by the Board of Medical Examiners for the State of Oregon. *The physician must also be willing to participate in the Act*. Physicians are not required to provide prescriptions to patients and participation is voluntary. Additionally, some health care systems (for example, a Catholic hospital or the Veteran's Administration) have prohibitions against practicing the Act that physicians must abide by as terms of their employment.

Children are often under treated for pain... why?

Physiological indicators(BP, O2, HR) may not give as accurate of a picture. Grimacing and crying may not be good indicators.

Sometimes the best thing a nurse can do when working in palliative care is to simply provide...

Presence Be a fully present listener, rather than a problem solver. Use nonverbal communication as much as verbal communication

This Disease and dying trajectory represents the course for a person with an illness that causes a prolonged decline ending in death. This is the pattern for frail older adults often demonstrate, especially those with illnesses such as Alzheimer's.

Progressive Deterioration

This disease/death trajectory involves the steady decline of a patient in the terminal phase of illness such as pancreatic cancer. Death usually results in weeks to months

Steady Decline

This type of disease/death trajectory involves unexpected and rapid death: MIs, accidents, violence. It was the typical dying trajectory of the 1900s

Sudden Death

When medications (such as narcotics) which are prescribed by physicians with the *intent to alleviate pain* have the unintended secondary effect of suppressing respiration which may result in death. (These are not reportable under the Death with Dignity Act.) "The _____________ Effect"

The *Double effect*

Are DWDA participating patients reported to the State of Oregon by name?

The State does collect the names of patients in order to cross-check death certificates. However, the law guarantees the confidentiality of all participating patients (as well as physicians) and the Oregon Health Authority does not release this information to the public or media.

The four domains of quality of life are: Physical Ps______________ S______________ S_______________

The four domains of quality of life are: Physical Psyschological Social Spiritual

Who drives the "goals of care" in terms of palliative care?

The patient and their families

If a patient's doctor does not participate in the Death With Dignity Act, how can s/he get a prescription?

The patient must *find another* M.D. or D.O. licensed to practice medicine in Oregon *who is willing to participate*. The Oregon Health Authority does not recommend doctors, nor do we provide the names of participating physicians or patients due to the need to protect confidentiality.

The presence (or absence) of _________________ systems can influence how nurses move through the stages of adaptation and coping with patient deaths.

The presence (or absence) of *Support* systems can influence how nurses move through the stages of adaptation and coping with patient deaths. (emotional support by family, peers and coworkers greatly increases one's ability to adapt and cope with the care of the dying)

How long does someone have to be a resident of Oregon to participate in the Act?

There is no minimum residency requirement. A patient must be able to establish that s/he is currently a resident of Oregon

When a patient reports "pain all over", you should consider psychosocial domain of pain. This may be "*T__________ pain* or *Existential distress*

Total Pain

Sometimes medical technology can be a bad thing. How?

We use it on people who are actively dying, thus causing discomfort or pain for the patient, caregiver distress and family suffering. shtuff like that

When _____________ are exposed to death frequently, they may not have time to resolve grief issues of one death before another one occurs.

When *nurses* are exposed to death frequently, they may not have time to resolve grief issues of one death before another one occurs.

Should you use the words death and dying with the patient and their family?

YES (obviously when appropriate..but don't tiptoe around it)

Should you tell someone who is grieving the loss of a loved one *you shouldn't feel that way* or *you'll eventually get over it* ?

You're a monster

*Loss*, *Grief*, and *Bereavement* should be assessed upon _________________ and bereavement care should continue after death of patient.

admission

Doctors fearing prescribing opioids. Rural pharmacies not carrying newer meds. Inner city pharmacies not carrying opioids out of fear from robbery. Fear of taking pain meds due to fear of addiction. Older adults thinking that pain is a normal process. These are all possible _____________ to pain relief

barriers

How do we identify the most appropriate treatment for the type of pain the patient experiences?

by performing a *comprehensive pain assessment*

Grief in children is based on their ____________________ stages, and can be *normal* and/or *complicated*

developmental

2013 *Clinical Practice Guidelines for Quality of Care* Developed by the *National Consensus Project (NCP)* came up with *8* _______________ of palliative care

domains

Studies have shown that relatively *small doses* of oral or parenteral opioids can be used to treat...

dyspnea

Survivor Personality Coping Skills Hx of Substance Abuse Relationship to the deceased Survivors spiritual belief system Type of death Survivors culture These are factors effecting ___________

grief

Many patients are *unaware* of their..... This knowledge may change what they wish to do for themselves and their loved ones

limited life expectancy

Its not what *we* can tell the patient, its about what the patient can tell us!

neat

Does care end at the time of death?

no We send cards, we follow up with phone calls, we help them with community care and resources

*Grief in older children* may include depressed traits, social withdrawal, sleep issues, antisocial behavior authority resentment, attempted suicide, substance abuse, sexual promiscuity, compulsive behaviors

ok

*Grief in younger children* may present as all sorts of emotions. rebellious behaviors, rages, nervousness, hyperactivity Excessive dependency on remaining parent. Wish filling dreams, denial

ok

*What is this like for you?....* good question to ask bereaved/grieving *Tell me about your loved one* or *What I remember most about your loved one is...*

ok

In practicing patient autonomy, it is important to find out *how much or little* the patient wants to know about their illness. its their right!

ok

Pain can be *physical/biological* (actual caused pain) *psychological* (depression/anxiety can worsen it) *Social* (quality of life, expense, cultural values or practices: stoicism etc.) *spiritual* (Questioning god? "why me?")

ok

Ask for permission before beginning a lengthy talk with a patient or family. Ask __________________ questions

open ended

What is the universal language of children?

play So let them use it as often as possible

Most people want to say things like "I love you", "i'm sorry", "I forgive you"... If we don't tell them of their prognoses we ________ them an their loved ones of these opportunities

rob

Family caregivers rarely...

take care of themselves

If a patient wishes to be well enough to attend his sons graduation in three weeks, we want to help achieve that goal. If the disease is early stage, then we may help with symptom management, we may hold off on his chemo because it make shim sick for weeks following. If the disease is advanced, we may try and provide an "early graduation" in his hospital room, or find him equipment to try and attend. Its all about the patients goals

yup