Grief
-Internal and external reaction to the perception that we have lost something. Physical/tangible losses or symbolic/pyschosocial loss (divorce, losing a job, phone). Amount of grieving time depends on the amount of attachment and nature of relationship.
-Can you grieve before you lose? It's called anticipatory grief.
Mourning
Timeframe or process in which we adapt to the loss that we've had. Readjustment environment. Takes a long time to untie yourself from the loss. Different cultures and rituals for dealing with the loss. Can be short or long.
Bereavement
The grieving and mourning process together. The length of time is dependent upon the intensity of the attachment.
Stages of Bereavement
1. Shock and numbness- "its not real"
2. Yearning and searching- denial of reality
3. Disorganization and despair- depression, difficulty focusing, anger
4. Reorganization
Grieving Models
1. Kubler-Ross- denial, anger, bargaining, depression, acceptance. 5 stages
2. Task-based model- pre-diagnostic, acute, chronic, recovery or death. takes Kubler-Ross and gives it medical terms.
3. Engle- shock and disbelief, developing awareness, reorganization and restitution
4. Martocchio- shock and disbelief, yearning and protest, anguish, disorganization, despair, identification in breavement, reorganization and restituition.
Dying Trajectory
-Patterns of decline caused by different diseases that shows that individuals do not die at the same rate. Path of life and experiences that are going to occur along that path.
-The problem is that we have actual trajectories (physiologically and actual happenings) and perceived trajectories (what they think is happening- they really have gradual slant and think they have downward slant). The perceived will change attitudes, behaviors, and thought processes.
-Duration of onset of disease to death.
Shapes of Dying Trajectories
1. Gradual slant trajectory- gradual disease progression, slow but constant.
2. Downward slant trajectory- Quick rapid progression of disease
3. Peaks and valley trajectory- get better then worse, every time something happens you go through the stages of grief all over again.
4. Descending plateaus trajectory
5. Uncertain trajectory- causes a lot of anxiety
---The longer the trajectory goes on the more draining it is for everyone, there are no right answers, there is nothing more we can really do other than comfort but that is difficult for everyone to accept.
Anticipatory Grief
Occurs in anticipation of loss
-Some people think you can't have this until the loss occurs. "Pre grieving". Controversial.
Pitfalls for the HCP with dying patients
-Withdrawl from patients, we don't want to be around death, patients sense this because quality of care and communication with pt changes.
-Isolation of emotions- takes a toll on us emotionally, find a method of escape
-Failure to perceive your own feelings
-Displacing feelings onto others
-Burning out from emotional involvement- Freq employee turnover.
-Fearing illness and death
What determines a patients value of life?
Religion, socioeconomic, life experiences that they've had along the way "life-changing experience", kids, near death situation, 3rd world country on mission. Perspective changes. Thier values, therefore as HCP, we need to decide what it is THEY want. We need to try to preserve and maintain a good quality of life.
Who decides when death has occured?
-Attending physician, or coroner if there is no physician
Suicide and 2 different types
Knowingly taking one's own life. The intent is death with effort being expended done by the patient.
-Passive- omission, not doing something, the right or refusal of treatment or nourishment--more socially acceptable
-Active- comission, actively doing something like a gun, knife, drugs, pills, etc...
Euthanasia and 2 different types
Act of painlessly putting to death another person who is suffering from an incurable and painful disease. Difference between this and suicide is who is doing it.
Active- Some specific act on behalf of the patient to end thier life. Unplugging the machine or taking off the ventilator. Generally this is called murder.
Passive- Decision to withhold nourishment and ressecitation from the patient.
Some Patient's Rights for Euthanasia
-Does the patient have the right to a good death or no?
-Legalized euthanasia under strict control
-Is there a right for quality vs quantity of life and does the patient have that right?
-Does the patient have the right to ask for drugs that will kill them?
What is death and how it is defined?
...
Heart Lung Death
Most accepted, simplistic, universally accepted definition
When a persons heart and lungs dont function and is irreversibly ceased, not breathing and no heart rate, the person is dead. Physiologic death. Heart is more important than lungs.
Brain Death
Not universally applied to all states, very clear legal definitions.
1. Unresponsive to applied or external stimuli and internal needs
2. No spontaneous breathing or movement (pt ventilator dependent)
3. No reflex activity means no brain activity
4. Flat EEG reading after 24hr period of observation
Once this criteria is met and confirmed by 2 doctors the person is considered brain dead.
2 things that can happen after brain death is confirmed
1. Declared dead while on a ventilator then readmitted as a donor, then taken for organ harvest
2. Ventilator unplugged then they go through heart/lung death.
Persistant Vegetative State (PVS)
-Cortical death where the brain stem is still functional. Upper portion of brain has been destroyed and lose all communicative ability, may have sleep wake cycles and involuntary repetitive movements.
-The brain stem controls vital signs, breathing, temperature, HR and still functions so breathing and heartbeat continue.Can't eat or drink even though they are not on respirator
-Cortex controls functions, personality, talking (what we consider emotionally alive) is destroyed.
-Things they may do- grind teeth, tears, swallowing, smiling, grunting, moaning, scream, vocal and active, no communication
-Nonrecovery in 30 days
-Not legally recognized as death so it comes back to HCP to decide what to do
Famous rulings that have allowed people in PVS to have nourishment withheld (passive euthanasia)
-Anthony David Bland
-Theresa Marie "Terri" Schiavo
In Idaho when is dead dead?
We accept the brain death definition as dead and official time of death is when brain death is declared.
Leading causes of death in the US
1. Diseases of the heart
2. Malignant tumors/CA
3. CVA
4. Chronic lower resp diseases
5. Unintentional Accidents
6. Diabetes
Top Deaths in the world
1. Heart Disease
2. CVA
3. Lower resp infection
4. HIV/AIDS--not on our list
5. COPD
6. Diarrheal diseases--not on our list
7. TB--not on our list
8. Malaria --not on our list
Life expectancy by race and gender
Life expectancy greater in women then men
1. White women
2. Black women
3. White men
4. Black men
Living will
A directive to a physician/HCP. Dying person to physican, usually in written record.
-List the kinds of medical treatments that you would want to have done
-Categories that you can check or places to fill in
-Defines how aggressive you want treatment to be- everything done to keep you alive or is there a point when you want it to stop
-Hard copy
**Problem with Living wills- hard to cover every situation and understand the passion someone may have about something. Questions come up that can't be answered in will.
-Interpretation of wishes.
Durable power of attorney aka health care proxy
Not going to write anything like a will, going to give someone my voice to make decisions. May be limited in time, scope, or method. Not anticipatory treatment. Very broad in decision making tool because there are so many decisions to be made. Trust must be developed. These take effect when you can no longer communicate.
Family Consent Laws
Laws on the books that will direct certain things.
Idaho Living Will Laws and when it takes effect
Idaho allows both living wills and health care proxies (durable power of attorneys)- not all states allow both. Can fill out online, no need for attorney or notorization. Needs to be communicated and signed.
-Idaho gives permission for a living will to be enacted if terminal condition or in a PVS certified by 2 doctors.
3 categories (3 options) of a living will
-Continuing life support- doctors everything to keep you alive
-Withholding life support- only fed and hydrated
-Withdrawing life support- all life sustaining treatments withheld
** All will attempt to keep you pain free and comfortable.
DNR order
Do not resuscitate order. In Idaho called Comfort One orders. Once EMS sees this they must comply with this order.
-Usually posted somewhere in house, usually near the front door
-Don't perform CPR if breathing or HR stops
-Only a decision about CPR, EMS will do other things to make pt comfortable, just no CPR
-Necklace, bracelets
Must a doctor answer your wishes?
In Idaho the answer is Yes or the doctor must transfer you to someone who will within 72hrs.
Who cannot be appointed as a Durable Power of Attorney in Idaho?
- Your doctor or any other treating HCP
-A non-relative employee of the hospital of your doctor or treating HCP (the hospital nurse)
-A operator of a nursing home, assisted living, or community living center
-A non-relative employee of a nursing home, assisted living, or community living center
**Basically no one that would have a vested interest in money or an employee of a place that has an interest in money
What happens if there are no advance directives and you live in the state of Idaho?
Goes to family consent laws in the state in which you reside.
1. The first person in charge to make decisions is the legal guardian, if not legal guardian--->
2. Person named in the living will or durable power of attorney, if no directive--->
3. If married, the spouse--->
4. If not married, a parent--->
5. If not the parents, any relative representing himself/herself to be appropriate responsible person to act under the circumstances--->
6. Any other competent individual representing himself to be responsible for health of person.
**Spouse, parent, relative, anybody.
States that permit physician Assisted Suicide
Oregon, Washington, Montana.
-Idaho says illegal.
-34 states have statutes explicitly criminalizing assisted suicide
-9 criminalize through common law- not written statutes
-3 are "undecided"... 2 are special cases
In the last 3 days prior to dying 56% of the terminal end of life population in the hospital had at least 1 of 3 attempted life sustaining interventions. These 3 interventions were...
-Attempted resuscitation
-Ventilator
-Tube feeding
**who was controlling this?
% in the US that said with an incurable disease with severe pain they would consider suicide?
4 in 10= 40%
% in US that answered yes when the question was posed "Are you afraid to die?
14% said yes, 83% said no, and 3% said idk
Breakdown of where the population would prefer to die?
Home-73%
Hospital- 13%
Somewhere else?- 4%
Depends- 2%
Something while someone was coughing- 3%
Hospice- 3%
Nursing Home- 1%
Breakdown of where the population actually dies regardless of wishes
Hospital- 74%
Other places- 30%
Involvement in health care decisions
The environment in which most involvement of decision making occurred was home, then hospice, then hospital
Best pain control in the last 3 days of life prior to death
Hospice (complete pain control, you get whatever pain meds you want), then home without hospice (partially in control), then hospital (not at all because you are on a timed schedule usually based on nurse assessment, more restriction)
Most important things to patients regarding end of life care
1. Confidence in your doctors and HCP, they will do for you what you would want
2. Not to be kept alive on life support where there is little hope for recovery.
3. Info communicated by doctor honestly and letting everyone know where they stand
4. To have affairs in order without any lose ends, make amends.
5. Not to be a physical or emotional burden to family
6. To have adequate care at home and relief of symptoms
**To die at home was #24. whole lot more that become more important when it all unfolds
% that said they would help family member die if they were terminally ill?
40% said yes, 46% said no, 14% were unsure
% that have considered suicide at some point in life
86% said no, 12% said yes, 2% said idk
How did the Oregon Law for physician assisted suicide come about?
-In 1994 citizens initiative that citizens voted on, Oregon Death with Dignity Act, ballot passed 51/49. It said we can do physician assisted suicide because we the people have approved it. Delayed because of legal injunction. Went to Supreme Court and injunction lifted in 1997. Voters again voted 60/40 and it was passed. 2001 attorney general initiated new controlled substance act saying physicians could not issue the medications that pt took or they would lose license, even though act was passed- backdoor way to stop act. 2002 law was upheld.
-1994 passed then 2004 law upheld. 10 year process.
-Oregon became first state to pass law
Oregon Death with Dignity Act specifications
-Must be 18, can't be mature minor
-Must be Oregon resident
-Must have terminal illness with less than 6months to live
-Make 3 written requests for a prescription, 1 written, 2 verbal
-Must be at least 15 days between the requests
--Once criteria has been met the attending doctor and a consulting doctor must confirm the diagnosis, make assessment of pt's mental capacity and if necessary physc eval, must inform pt of hospice care.
Stats on Oregon population that chose Assisted suicide as an option
-Median age = 69
-Range = 24-94
-Number of days between first request and death = 42
-Marital status = 44% married, 22% divorced, 24% widowed, 7% never married. No strong correlation of marriage and this kind of death option.
-Types of illness = 77% CA, 23% Other ALS, AIDS
-Where did they die? = 91% at home, 8% assisted living, 1% hospital
-Race = 97% white non-hispanic, 3% asian
-Education level= Less than HS 11%, HS grad 46%, College grad 30%, Post BS 13%
Fairly educated group
-Pt's biggest concern= Losing autonomy and control, inability to participate in activities, losing bodily fx, burden on fam
Selling vs Marketing
-Selling is having
-Marketing is figuring out what people want and then getting it for them, not even what they want but what they don't know what they want.
Each day about how many people receive organ transplants? and each day how many people die waiting for transplants?
79 people receive, 18 people die.
How does organ donation take place? Maintained, matched, distributed?
Large national computer registry called OPTN (National Organ Procurement and Transplantation Network), operated by an organization called UNOS (United Network for Organ Sharing) that operates and maintains organ registry and matches donors to patients every minute of every day. When an organ becomes available they plug in information about the donor and they look for matches. It also includes education for public and professionals. Ensures distribution is fair
There are 58 organ procurement organizations (OPOs) across the country--they provide organ procurement services to 261 transplant centers.
When someone dies what is required of the hospital?
Every hospital is required to have a "Required Referral" system in place to contact local OPO about all pt's death. OPO must determine if pt is a candidate, if they're a donor, look at pt's health issues, then they will send rep to contact deceased member's family to see if organ donation process is going to be followed through.
Most OPO's are geographically dispersed rather than by cities.
-Our OPO is Pacific Northwest Transplant Center
-The transplant hospitals are in bigger cities, Portland, Seattle, SLC.
What types of organs/tissues can be donated?
-Heart, Liver, Kidneys we think of most
-Lung (cystic fibrosis pts), Pancreas, Intestine, Cornea, Skin/Ligaments, Bone, Bone Marrow, Vessels, Blood (most common, most under utilized donation) only 4% of Americans donate blood.
-Reproductive organs-sperm and eggs
Who can donate?
-Age limits no longer exist, usually the general age limit is 70.
-Generally healthy individuals. Medical staff will do testing at time of death to make determination.
-HIV, systemic infection (Hepatitis), disseminated CA, poor general health are all negatives.
-All can donate, all can receive
Ultimately who is responsible for giving permission to donate organs?
The family of the deceased usually must give permission even if deceased has already signed a legal donor card or has marked their wish on their DL.
**Reason why communication of your wishes with family is extremely important.
After permission granted they can take anything/everything they need, a lot of organs like skin/ligaments/heart valves/ bones etc..are not critically necessary to match so easier process than heart or liver.
True or False
Tissue must be donated prior to heart lung death?
False, cardiac death may have already occurred. Tissue recipients do not have to be matched to their donors as closely because rejection is usually not an issue
Statistically the vast majority of organ recipients are what age group?
In 2008, 56% (15K/28K), were 50+
Living donor
The donor is still alive, giving a person part of yourself.
Most frequent type of living organ donation?
Kidney
Organs that can be donated by a living donor?
Kidney- remaining kidney will compensate
Liver- segments can be donated because liver will regenerate
Lung- One lobe can be donated even though it will not regenerate
Pancreas- Portion can be donated, no regeneration
Intestine- very rare but possible to donate portion
Heart- Domino transplant
Domino Transplant
When your a heart lung recipient and you get the whole heart lung combo, your heart may be better than someone else's heart and it is really your lungs that are the most problematic, so you receive a h/l combo from a deceased person and your heart will be given to a patient who needs a heart donation.
Each year approx how many people will be dx with life-threatening diseases such as leukemia which are treatable by bone marrow or stem cell transplant
30,000
Blood donation facts:
-How many lives can 1 Blood donation potentially save?
-What % of pop donate?
-How often can you donate?
-1 donation can save as many as 3 lives
-Only 4% of the population donate
-Adults can donate blood every 56 days.
To be a living donor you must meet the following criteria
-Physically fit, in good general health, free from HTN, diabetes, CA, kidney disease, and heart disease.
-usually between 18-60
-Gender and race not factors
-Undergo blood tests to determine compatibility with recipient
** Must be a healthy specimen
Additional tests that may be performed if initial blood test confirms living donor and recipient are a match
-Tissue typing (WBC)
-Crossmatching (blood test to test any reaction of blood types indicating incompatibility)
-Antibody Screen (blood test to test for reactive antibodies in response to donor blood)
-Urine tests (24hr collection to assess kidney fx for kidney donor)
-CXR and EKG (assess any h/l disease)
-Psychiatric and/or psychological eval
Preservation times for organs
Heart- 8hrs MAX (typical 5)
Lung- 8hrs MAX (typical 5)
Intestine- 14hrs MAX
Liver- 18hrs MAX
Pancreas- 25hrs
Kidney- 37hrs
**All support and coordination must be in place, donor must be near a transplant hospital and ready to go.
How many people are on the organ donation waiting list?
114K
Urgent- 72K
Transplant Recipients to Donors from Jan 11- Jan 12
2K to 1K meaning that each donor had to donate multiple organs. Donors are able to donate up to 8 organs.
Organs that are most needed for transplant
Kidney- 98K
Liver- 17K
Heart Donations specifics
-Must be matched by size because the thoracic cavity is only so big
-Blood type
-Body weight
-Severity of illness
-Geographic location
-Have to be brain dead, not h/l dead
-Heart can be disconnected for up to 4 hrs
-Cold environment
-72% of heart transplants are male, 70% are white, 46% are between 50-64yrs old
**Problem if your a seriously ill patient is that you have to live within proximity of transplant center. Have to relocate self and family. Whole environmental change.
Heart Transplant 1 year survival rates
87% for males, 85% for females, slowly declines for 3 and 5 year survivals but stays around 70 at the lowest point.