1. Caring for the Dying Patient
Keith Rischer RN, MA, CEN
Death is part of life
2.5 million die in US annaually
80% >65 yrs

2. Today’s Objectives…
Discuss the current ethical issues surrounding end of life care.
Identify goals of end of life care.
Compare & contrast the emotional & spiritual needs of the family and client who is dying.
Contrast early vs. late physical changes in the client who is dying.
Describe nursing goals and priorities for managing the client who is dying.
Contrast the needs of the family with the nurse in the client who has died.

3. End of Life Ethics Assisted Suicide Withdrawal food/fluids
Passive vs. Active Euthanasia
Legalized active euthanasia in US
Oregon “Death w/Dignity Act”
Ethics-moral philosophy to determine what is right…worldview-refers to the framework of ideas and beliefs through which an individual interprets the world and interacts in it
Naturalistic-Darwinian-evolution-survival of the fittest-no intrinsic value in human life-there is no God…vs. Biblical worldview-God is…human life has intrinsic value-created in the image of God
Which worldview do all of these trends represent???
Asssited suicide he claims to have assisted at least 130 patients to that end. He famously said that "dying is not a crime."[citation needed]
Between 1999 and 2007, Kevorkian served eipenisght years of an 11-to-20-year prison sentence for second-degree murder. He was released on June 1, 2007, on parole due to good behavior.[3]
Oregon Oregon enacted the Death with Dignity Act (the Act)-upheld in 2006 which allows terminally-ill Oregonians to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose.  Barbituates Rx of choice-40 deaths on average annually
The Law Under the law, a capable adult Oregon resident who has been diagnosed with a terminal illness by a physician may request in writing, from his or her physician, a prescription for a lethal dose of medication for the purpose of ending the patient's life. The request must be confirmed by two witnesses, one of whom cannot be related to the patient, be entitled to any portion of the patient's estate, be the patient's physician, or be an employee of a health care facility caring for the patient. After the request is made, another physician must examine the patient's medical records and confirm the diagnosis. The patient must be determined to not suffer from a mental condition impairing judgment. If the request is authorized, the patient must wait at least fifteen days and make a second oral request before the prescription may be written. The patient has a right to rescind the request at any time.
The law protects doctors from liability for participating in assisted suicide. Furthermore, no doctor is required to participate. Also, the law specifies that a patient's decision to end his or her life shall not "have an effect upon a life, health, or accident insurance or annuity policy."
Withdrawal food/fluids woman who suffered brain damage and became dependent on a feeding tube. She collapsed in her home on February 25, 1990, and experienced respiratory and cardiac arrest, resulting in extensive brain damage, a diagnosis of persistent vegetative state (PVS) and 15 years of institutionalization. In 1998, Michael Schiavo, her husband and guardian, petitioned the Pinellas County Circuit Court to remove her feeding tube. Robert and Mary Schindler, her parents, opposed this, arguing she was conscious. The court determined that Terri would not wish to continue life-prolonging measures.[1] This controversy stretched on for seven years and included involvement by politicians and advocacy groups, notably pro-life and disability rights ones.[2] Before the local court's decision was carried out, on March 18, 2005, the governments of Florida and the United States had passed laws that sought, unsuccessfully, to prevent removal of Schiavo's feeding tube.
Active euthanasia- Holland (or more properly, the Netherlands) is the only country in the world where euthanasia is openly practiced. It is not allowed by statute, but the law accepts a standard defence from doctors that have adhered to official guidelines. These hinge on voluntariness of the request and unrelievable-ness of the suffering. It is not a condition that the patient is terminally ill or that the suffering is physical.
1995: 2.4% Physician-Assisted suicide 1995: 1995: 19.1% Withdrawing/with-holding potentially life-prolonging treatment 1995: 20.2% Total of % out of 136,000 deaths
Euthanasia in The Netherlands is "beyond effective control", according to a report which shows that one in five assisted suicides is without explicit consent.
The Dutch survey, reviewed in the Journal of Medical Ethics, looked at the figures for 1995 and found that as well as 3,600 authorized cases there were 900 others in which doctors had acted without explicit consent. A follow-up survey found that the main reason for not consulting patients was that they had dementia or were otherwise not competent.

4. Advance Directives Living will Durable power of attorney
Legal document instructs measure of care desired if incapable
Shortcomings
Life & death choices over unknown set of circumstances
Some ethicists believe document is “worthless”
Durable power of attorney
Since their inception, living wills have exhibited flaws: People with living wills don't always tell their relatives about them, so their wishes remain unknown. Hospitals find the wills difficult to interpret: a stated preference not to receive artificial nutrition when brain-dead may not apply if a person is comatose. And it's difficult to address all possible end-of-life situations in a living will - especially as life-sustaining technology continues to evolve.
Recently, two University of Michigan researchers, writing in the bimonthly Hastings Center Report, a journal that examines issues in medical ethics, concluded that living wills are useless.
"It's very hard for people to predict their preferences for an unknown health condition," said Angela Fagerlin, a research scientist and co-author of the article. In addition, "decision makers have a difficult time interpreting [living wills]," Fagerlin said.

5. Concerns of Dying Patient
Fear of physical pain and suffering
Symptom burden
Fear of unknown
Fear of loneliness
Anonymity
Loss of choice over destiny
Loss of dignity
Loss of consortium
Separation and lack of connection
Spiritual
Financial

6. Early Physical Changes
↓ Appetite ↑Weight loss
Assistance with ADLs
Pain (> or < )
Increased HR; Potential O2 deficiency
Drowsiness
Fatigue

7. Early Emotional Changes
Months to Weeks
Hope
Desirable
Expectational
Withdrawal
Changes in mood
Anger, irritable, hope, denial, ect
World view changes; gets smaller
Attending to business
Hope empowers, generates courage, motivates action, and strengthens physical and psychological function.
Pattison defined 2 types of hope
Desirable: wishes are something that would be appreciated if it were to occur without the expectation that it will or must occur. Ex. the patient says “I hope I get better” when rapidly declining could comment that that would be great but what can I do now to make you more comfortable. The hope may be related to living till a child graduates, a grand daughter marries, a grandchild is born. It is desirable but may or may not occur
Exceptional hope is more unrealistic; Ex the patient says “I hope to get better” meaning I hope for a miracle or a cure; this is a reflection of something not probably going to occur. This can increase stress or can be a denial that keeps a patient and family going. 7

8. Spiritual Distress Signs of Spiritual Distress Doubt Despair Guilt
Anger
Boredom
Isolation
Statements of regret
Statements of unresolved hurt
Nursing Interventions
Ask about their source of strength
Discuss sources of spiritual strength throughout their lives
Assess support system
Assess coping
Refer to clergy/chaplain
Ministry: ex. Stephens Ministry at churches
The spiritual dimensions deals with the transcendental relationship between the dying person and another; or their God or significant other. Spiritualty can be met through religious acts or through human caring relationships. This leads us to a feeling of self-love, and a connection with others. 8

9. Family Needs
Focus on dying patient without losing the present and future
The work of daily life goes on
Anticipatory grief
Increase in responsibilities (house, finances, work, children, and acting as a caregiver).
Need for support from family, community, spiritual faith.

10. Goals of Nursing Care for the Dying
Hospice
Improve quality of life w/terminal illness
Control symptoms
Pain
N&V
Fatigue
SOB
Identify-prioritize needs
Promote meaningful interactions w/family and others
Facilitate peaceful death

11. Nursing Care:Holistic
Chaplain/ Clergy visit
Hospice/ respite care
Hospice/Home Care
Provide CNA daily for ADL hygiene and care
More frequent RN visits
More frequent Social Worker visits
Talk candidly about end of life= how it will likely be for that specific patient

12. Nursing Care:Physical Priorities
Pain management
N&V management
Fatigue management
Skin care
Mouth care
Urinary care
Respiratory care
Comfort

13. Nursing Care: Physical Priorities
Attend to any needs of patient
Pain
Long acting analgesics with medication for breakthrough pain
May need to increase doses of medication
Counsel pt./family on pain cycle and breakthrough pain
Nausea
Antiemetics…Zofran
Foods that taste good with increased protein and fat
Ensure or supplements
Comfort
Comfortable bed
Chair
pillows

14. Why Pain?
Practitioners are not trained in state-of-the art pain management
Myths about addiction, dependence, and tolerance abound
The toll that unrelieved pain takes on the body and mind is not understood or acknowledged
Fear that pain intervention might cause the patient to die
Flawed assessments
Disconnect
Failure to look at non-physical sources

15. Nursing Care: Physical Priorities
Mobility
Cane, walker,
Prevent falls
Falls often indicate change in status
Sleep
Sleeping more? Less? Look at medications and physical status. Normal to increase in sleeping.
Fatigue
Do what only matters, find what is important to patient
Hospice volunteer for family for relief

16. Nursing Care: Physical Priorities
Neuro
Changes due to disease (brain mets, lack of oxygen?) CV
May need fan for cool or light weight blankets for warmth
Lungs
Teach use of several pillows, O2 may be needed
Skin
Teach positioning, turning, and prevention of breakdown GI
Use of stool softeners is a must; may need laxatives later on
Urinary
May have incontinence (pads, diapers, last resort is foley)
Medications
Order what is needed for comfort
Medications
Order what is needed for comfort; close relationship with Doctors and Office nurses; weekly meetings if in Hospice with medical management.

17. Changes with Weeks Remaining: Physical Changes
Profound weakness
Bedbound
Falling if ambulating
Muscle weakness
Potential skin breakdown
Increased care needed VS
↑ HR ↓ Pulse

18. Dyspnea Managment Morphine sulfate Diuretics Bronchodilators
Antibiotics
Anticholinergics
Atropine
Sedatives
Oxygen
Treatment of the primary cause and relieve the psychological distress that accompanies the symptom

19. Changes with Weeks Remaining: Emotional Changes
↑ Fear, apprehension or peacefulness
↑ withdrawal into self
Often sees “spiritual beings”
God; previous family members who have died speaking out to them
Only allows family and loved ones in their world
Starts to say goodbye to loved ones
A sense of peace and finished business may be felt OR a sense that there is not enough time left to finish life

20. Changes with Weeks Remaining: Family Needs
How to care for their love one
Focus is home care management
May not be able to get to PCP’s office
May involve equipment and teaching nursing care for ADLs
O2, transfer techniques, shower chair, turning techniques, decubitus care, mouth care, foley care, ect
Pain relief
Symptom management
Medication management increases
Subq meds, rectal suppositories
Psychological support increases
Focus on quality of life vs. quantity

21. Imminent Death:Nursing Care
Medication management
If unable to swallow (subq, rectal suppositories)
For death rattle “Scopolamine patch” works
Pain management
Comfort measures increase
Turning, mouth care, positioning of limbs, warm/cool measures, eye drops, ect
Assistance respiratory with positioning

22. Imminent Death:Physical Changes
Actively Dying: hours remain
Confusion and disorientation
Metabolic changes
Withdraws from family “going” somewhere
Decreased consciousness
May refuse all fluid and food
Body conservation of energy for function
Total care ↓ alertness ↑ drowsiness
Metabolic changes and decreased oxygen to brain
↑ Restlessness
↓ BP ↑HR ( )
Peripheral circulation diminishing to vital organs
Mottling of extremities

23. Imminent Death:Physical Changes
Incontinence of urine and bowel
Increased muscle relaxation and decreased consciousness
May be incontinent around the foley catheter
Dependent areas become cyanotic & cold
Skin color is pale and mottling of skin occurs (knees, legs, nose)
Slower pupil response to light, & eyes fixed stare-even in sleep
Muscle becomes slack, decreased oxygen
Speech may be difficult and soft
Muscle becomes slack
Hearing is thought to remain present
Vision may be lost

24. Imminent Death:Physical Changes
Cheyne-Stoke respirations
Metabolic and oxygen changes
Decreased RR
Death rattle
Profuse perspiration
Decreased circulation to all organs as they are shutting down
↓ urinary output
Decreased vital organ/ kidneys shutting down
Body temp varies
May decrease or rise

25. Imminent Death:Emotional Needs
Sense of peacefulness in the room
Family and loved ones present
Caring feeling by loved ones
Its going to be OK
Its OK to go now
Your work is done
I love you/ I forgive you

26. Imminent Death: Family Needs
Presence of Nurse
Care for patient
Support for patient and family
Educate family throughout the process to avoid the feeling of not knowing what next
Be the detail person
Be prepared for how family will handle death
Know emergency numbers for family/hospice
Make final arrangements
Mortuary; pick up equipment, clean up room.

27. Imminent Death: Family Needs
Encourage them to stay with patient
Touch and talk with patient
Be vigilant about what the patient hears, even though he/she cannot respond
Encourage active comfort measures
Light massage, mouth care,
Allow them time to privately grieve with family
Acknowledge the process of dying
Skin cooling, cyanosis, Cheyne-Stokes, urinary incontinence (all this is normal)

28. Pronouncement of Death
Cessation of blood pressure, pulse and respirations.
In hospice is pronounced by RN (or Social Worker in some states)
Blood pressure may be not be able to be palpated for hours before death
Final respirations may be gasping
Eyes are fixed (pupils fixed and dilated)
No apical pulse

29. Needs of the Family After Patient’s Death
Presence of a support system
Family, chaplain, nurse, social worker
Make sure someone is with them
Don’t leave them alone to go home
No One Dies Alone at ANW
Vounteers who stay during last hours
Call family members if needed (when unexpected)
Allow time for the family to spend with the patient who died
No One Dies Alone at ANW

30. Needs of the Nurse After the Patient’s Death
Support system
Other staff, friends, family (who can listen to you)
Physical and emotional rest
Attend memorial or burial service for closure
Final separation from family
Remind yourself that you made a difference

31. Near Death Experiences
Altered state of consciousness during brief cessation of VS (cardiac arrest)
Tunnel of light
Sense of being separated from body
Fear & anxiety-torment
Afterwards for patient
More spiritual minded-less material focused
Less fearful of death
Nurse’s role
“What do you remember about being unconscious?”
“Did you have a sense of being separate from your body while we were reviving you?”
Avoid negative statements during code