Nursing, Palliative Care & Death: A Natural Progression Of Life

Presented by

Veronica Gordon, MSN, RN

Lavonya L. McAlister, MSN, RN &

Julius H. Penning, MSN/ED, RN, CRRN

Disclosures

Presenter(s), Veronica Gordon, Lavonya McAlister, and Julius Penning have no interest to disclose.

This continuing education activity is managed and accredited by the Academy of Spinal Cord Injury Professionals, and accrediting organization(s) do not support or endorse any product or service mentioned in this activity.

Learning Objectives

At the conclusion of this activity, the participant will be able to:

1. Describe palliative care, death, and how

nurses impact it.

2. Identify a patient’s need for palliative care.

3. Discuss the nurses need to understanding

pain and the four dimensions of assessment

and care.

What is DEATH???

- The cessation of all vital functions of the body including the heartbeat, brain activity (including the brain stem), and breathing

- The irreversible cessation of all vital functions especially as indicated by permanent stoppage of the heart, respiration, and the brain activity: the end of life

Clinical DEATH

Cessation of all vital functions of the body

- Heartbeat

- Brain activity (including brain stem)

- Breathing

Organ Transplantation

- Identifying moment of death may involve another life

- It takes on supreme legal importance

- Precisely defined due to the need for transplant of organs

Death a Scary Subject

Death Cafe’s goal: to help people make the most of their lives, their “finite” lives, by giving them a chance to talk about death. It’s something family and friends often refuse to contemplate.

Read more here: http://www.kansascity.com/news/local/article405967/Appreciating-life-at-Death-Cafe.html#storylink=cpy

(The Kansas City Star: May 23, 2014)

Why is DEATH so Scary???

Thanatophobia: Fear of Death

Religious Issues

- Beliefs may be wrong

- Straight and Narrow path,

deviations??

Fear of the Unknown

- Cannot be unequivocally proven

Fear of Loss of Control

- Utterly outside anyone’s control

(Fritscher, L. (2014)

Why is DEATH so Scary???

Concerns about Relatives

* Who will care for them, finances, what

will happen

Fear of Death in Children

* Don’t fully understand time, some

people leave and come back again

* Healthy part of normal development,

lack defense mechanisms

Fear of Pain, Illness or Loss of Dignity

* Do not actually fear death itself

(Fritscher, L. (2014)

DEATH

Why is DEATH Not Accepted???

Death has a thousand faces, but dying has a millions ways.

* “A Million Ways To Die In The West”

Death is ubiquitous and universal

Death attitudes affect how we live

We live in a death-denying culture

(Wong, P. (2002)

Self-Determination

Patient Self-Determination Act (1991)

Right to facilitate own health care decisions

Right to accept or refuse medical care

Right to make their own advanced healthcare directive

* Living Will

* Power of Attorney

(Cipolletta & Oprandi, 2014)

DEATH, a Natural Process

Two dynamics at work

* Physical plane

* Emotional-Spiritual-Mental plane

Body

* Final process of shutting down

* Maintaining comfort enhancement measures

Spirit

* Final process of release from the body,

its environment, and all attachments

* Support and encourage this release and transition

(Hospice, 2016)

What is Palliative Care

Palliative care is specialized care for individuals with serious or terminal illnesses.

The main goal is to ease pain and discomfort from symptoms and stress of a serious illness. Never-the-less, social, psychological and existential support may also be offered to both patients and relatives.

Palliative care aims to enhance quality of life (gain the strength to carry on with daily life) for patient’s and the family as much as possible when cure is no longer an option.

(Get Palliative Care, 2016)

Patient’s need for palliative care

Palliative care is needed if a patient suffers from pain, stress or other symptoms due to a serious illness. Serious illnesses may include cancer, cardiac disease, respiratory disease, kidney failure, Alzheimer’s, HIV/AIDS, amyotrophic lateral sclerosis (ALS), multiple sclerosis and more.

Symptoms due to a serious illness include depression, pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and much more.

Palliative care is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Who is Part of the Palliative Care Team? Palliative care is provided by a specially-trained team of

doctors, nurses, social workers and other specialists who work together with a patient’s doctors to provide an extra layer of support. Massage therapists, pharmacists, nutritionists, chaplains and others may also be part of the team.

The palliative care team works in partnership with the patients doctor to provide an extra layer of support for the patient and their family. The team provides expert symptom management, extra time for communication and help navigating the health system.

* Palliative patients identified hospitals as a safer place than

home, offering relief to the family and the possibility of

feeling better. So we need our hospitals more than ever to

be confident and competent in palliative care.

(Get Palliative Care, 2016)(Taylor, & Chadwick, 2015)

Nurses Preparing for Palliative Caregiving

Preparedness facilitates the transition experience, and related to this is knowledge about what to expect during a transition and what strategies may be helpful in managing it—something that could be supported by nursing interventions

Preparedness for caregiving is the perceived readiness.

(Janze & Henriksson, 2014)

Nurses Preparing for Palliative Caregiving (cont.)

Readiness includes:

* Providing physical care

* Being knowledgeable

- Learning through actively seeking updated information, trial

and error, earlier experience and guidance by others.

- Be able to provide knowledge to the family on preparedness

to include expectations on emotional and physical wellbeing.

* Giving emotional support

- Knowing not only what to do, but also feeling ready to

manage the demands of the caregiver role.

- Providing support to family caregivers is an important aspect

of both palliative care and nursing.

* Dealing with the stress of the role(Åhsberg & Carlsson, 2014)(Janze & Henriksson, 2014)

Nursing Responsibility

It is important that providers and caregivers review the four dimensions in order to provide proper care and support.

Assess all dynamics in relation to the closure of the patients life.

Poor management of these four dimensions may hasten death by increasing stress, pain, anxiety, and diminishing spiritual meaningfulness.

Enlist help of interdisciplinary services such as chaplain, social worker, psychologist, pain management specialist, and etc.

Make accommodations.

Four Dimensions of Assessment and Care

Physical Well-Being

* Activities of daily living, Appetite, Strength, Pain,

Fatigue, Nausea

Psychological Well-Being

* Stress, Fear, Cognition, Depression, Anxiety, Relief

Social Well-Being

* Relationships, Finances, Sexual Function

Spiritual Well-Being

* Religion, Hope, Loss , Meaning

Cultural Competence

“Nurses who lack understanding of a dying patient’s cultural and spiritual needs at this difficult time can make that person’s death an even more traumatic experience for his or her family members”.

(Minoritynurse.com, 2016)

Ethical Dilemmas

Redirecting negative thoughts of the team

Changing the “culture” of acute rehabilitation

Team perceptions

* Fears and anxieties

* Biases

* Need to teach “old dogs new tricks”

Help the team replace anger and frustration with empathy and compassion

Nurses Revisiting the Mission

The mission:

* improve quality of life

* providing high quality physical rehab

* providing high quality cognitive rehab

Shift of thinking for the whole team

* feeling guilty

* sensation of giving up

Honoring Patients’ Preferences for End-of-Life Care

Fast Facts: U.S. Statistical Data

2014 registered deaths: 2,626,418

Patients received hospice service: 1.6 to 1.7 million

Deaths while under hospice care:1,200,000

Leading causes of death:

Non- Cancer: 63.4%

Cancer: 36.6%

Veterans deaths: One of every four Americans who die each year is a Veteran

(Hospice Care in America (2015)

(Shreve, S. S. (2016)

Fast Facts (cont.)Hospice and Palliative Care Department of Veterans Affairs Annual Report-FY15 73% of all inpatient deaths received palliative

care

More inpatient deaths occurred in VA inpatient hospice units than inpatient ICU and Acute Care combined

84% of the families of the inpatient decedent, rated care in the last 30 days as “Excellent” or “Very Good”

Earlier palliative care consultation continues, with now 41% occurring more than 30 days prior to death (Shreve, S. S. (2016)

Spinal Cord Injury Facts & Statistics

2015 estimates range from 240,000 to 337,000 people live with SCI in the USA

52% of spinal cord injured individuals are considered paraplegic and 47% quadriplegic

Age at Time of Injury(Paraplegic)

Life ExpectancyAfter Injury

20 46 years

40 28 years

60 13 years

Spinal Cord Injury Facts & Statistics

85% of SCI patients who survive first 24hrs are alive at 10 years post injury

89% are discharged to a private home

* 4.3% are discharged to a nursing home or LTCF

Most common cause of death is respiratory

SCI patients dying of unrelated causes: septicemia, cancer, cardiovascular, etc.

Spinal Cord Injury patients receiving Hospice care increasing.

Longevity of life increasing with improved & increasing technology

(Spinal Cord Injury Model Systems, 2015)(Spinal Cord Injury (SCI) Facts and Figures at a Glance, 2015)(NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION, 2015)

Palliative Role and Spinal Cord Injury

Physical Distress

Interventions

Special Training

Special Equipment

Existing long-term relationship

Social Distress

Rehabilitation

Psychosocial/Emotional Distress

Spiritual Distress

Limited Disability

Values and Hope

Palliative Care Metric Report VISN Definitions and TermsWorkload Complexity- All inpatient and outpatient

completed palliative care consults with an encounter.

Level 1-2 * 99251- 20 minute consult

* 99252- 40 minute consult

Level 3-5* 99253- 55 minute consult

* 99254- 1 hour or longer consult

* 99255- 1 hour or longer consult

* OR admission to hospice or palliative care

(Palliative Care Reporting, 2016)

Palliative Care Metric Report VISN Definition and Terms (cont)

Treating Specialty- Inpatient Hospice Admission (TS96/1F)

* 1F- Patients with hospice admission to Acute Care Setting

* TS96- Patients with hospice admission to Community Living Center

Inpatient Palliative Care Summary

Inpatient deaths: completed PCC within 12 mo. of death OR hospice admit

Inpatient deaths

=

(Palliative Care Reporting, 2016)

Workload Complexity

*Includes 38 outpatient consults for FY16 (Palliative Care Reporting, 2016)

Transitioning to Comfort Care

(Palliative Care Reporting, 2016)

MEDVAMC Palliative Care Data

(Palliative Care Reporting, 2016)

Benefits Palliative Care Consults have on End of Life Care Expert Physical, Pain, and Symptom management

Psychosocial/Emotional support

Spiritual and Cultural support

Discussions, Negotiation, and Advance Life Planning and End of Life Goals

Early Education and execution of advanced directive, allows patients EOL preferences to be honored and decrease decision making burdens on the family.

Guidance in appropriate disposition (inpatient or community hospice)

Holistic and supportive care regardless of palliation or curative intent

(Bailey, Harman, Bruera, & Arnold, 2016)(Finestone & Inderwies, 2008)(McAteer, R., & Wellbery, C. (2013)

Impact of Transitioning to Comfort Care on Quality End of Life

Improved pain and symptom management

Improved quality of life and mood

Prevent suffering and unnecessary hospitalization

Prevent invasive and burdensome procedure and treatments

Decreased hospitalization costs with improved utilization of supportive and health care resources

Increased decision making and a sense of control

Caregivers, family, and friends report greater satisfaction

Improved End of Life care and increase survival rate

Communicate End-of-Life Wishes; reduce confusion about goals of care

(Ahluwalia et al., 2014)(Bailey, Harman, Bruera, Arnold, & Savarese, 2016)(McAteer, R., & Wellbery, C. 2013)(Temel et al., 2010)

Dignified Transfer of the Veteran to the morgue

is a final tribute and honor for the deceased Veteran

PROCEDURE:

Union (field of blue STARS) should rest at the HEAD and over the LEFT SHOULDER of the deceased Veteran’s body.

Exiting the Veteran’s room, the FEET exit FIRST.

Entering the morgue, the Veteran’s HEAD enters FIRST.

Dignified Transfer A Final Salute

QUESTIONS

Nursing, Palliative Care & Death: A Natural Progression Of Life

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experiences of nursing assistants. International Journal Of Older People Nursing, 9(4), 298-305 8p. doi:10.1111/opn.12035

Ahluwalia, S., Ettner, S., Pantoja, P., Lorenz, K., Tisnado, D., & Walling, A. (2014, February 2). Early Care Planning Discussions Are Associated with Less Hospital Care at End of Life in Veterans with Advanced Cander (TH336-C). Journal of Pain and Symptom Management []. Retrieved May 23, 2016 from: http://dx.doi.org/10.1026/j.jpainsymptom.2013.12.064

Bailey, A.F., Harman, S.M., Bruera, E., Arnold, R.M., & Savarese, D.M. (2016). UpToDate [Peer commentary on the journal article “Palliative Care: The last hours and days of life”] by Wolters Kluwer, 1-23. Retrieved June 6, 2016 from: http://www.uptodate.com/contents/palliative-care-the-last-hours-and-days-of-life

Bombard, T. (2014). Neurotrauma Review Series PART 4: Autonomic Dysreflexia. EMS World, 43(4), 52-55.

Cipolletta, S., & Oprandi, N. (2014). What is a Good Death? Health Care Professionals’ Narrations on End-of-Life Care. Death Studies, 38(1), 20-27 8p. doi:10.1080/07481187.2012.707166

Finestone, A.J., & Inderwies, G. (2008, September 3). Death and Dying in the US: the barriers to the benefits of palliative and hospice care. Clinical Interventions in Aging, 3(3), 595-599. Retrieved Juen6, 2016 from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682390/

Fritscher, L. (2014). Thanatophobia: Fear of Death, American Psychiatric Association, Retrieved from: http://phobias.about.com/od/phobiaslist/a/thanatophobia.htm

Get Palliative Care. (2016). Retrieved from https://getpalliativecare.org/whatis/

References:

Hospice (2016). Hospice, Preparing for approaching death. Retrieved from: http://www.hospicenet.org/html/preparing_for.html

Janze, A., & Henriksson, A. (2014). Preparing for palliative caregiving as a transition in the awareness of death: family carer experiences. International Journal Of Palliative Nursing, 20(10), 494-501 8p. doi:10.12968/ijpn.2014.20.10.494

McAteer, R., & Wellbery, C. (2013, December 15). Palliative Care: Benefits, Barriers, and Best Practices [Letter of editor]. American Family Physician, 88(12), 807-813. Retrieved June 3, 2016 from: http://www.aafp.org/afp/2013/2015/p807.html

Medical-dictionary.the freedictionary.com (2016). Clinical death / definition of clinical death by medical dictionary. Retrieved April 19, 2016 from: http://medical-dictionary.thefreedictionary.com/Clinical+death

Merriam-Webster.com (2015). Death: Medical Definition of DEATH, Retrieved from: http://www.merriam-webster.com/medical/death

Minoritynurse.com (2016). Nurses, culture, and cancer – minority nurse, Retrieved 03/11/2016 from: http://minoritynurse.com/nurses-culture-and-cancer/

NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION. (2015). Retrieved August 6, 2016 from http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf In-line Citation:(“NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION,” 2015)

National Spinal Cord Injury Statistical Center. 2015 Annual Statistical Report for the Spinal Cord Injury Model. Systems Public Version. University of Alabama at Birmingham: Birmingham, Alabama. Retrieved August 6, 2016 from https://www.nscisc.uab.edu/reports.aspx Last access: December 2015.

References:

O’Gorman, S.M. (1998), Death and dying in contemporary society: an evaluation of current attitudes and the rituals associated with death and dying and their relevance to recent understandings of health and healing, Journal of Advanced Nursing, 27, 1127-1135, Retrieved from: http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2648.1998.00659.x/pdf

Palliative Care Reporting. (2016, February). Retrieved August 9, 2016 from http://vssc.med.va.gov/

Shreve, S.T. (2016). Enhancing Access to Quality Care for Seriously Ill Veterans, Veterans Affair Central Office (VACO): FY 15 Hospice and Palliative Care Annual Report [Discussion group comment]. Retrieved June 27, 2016 from? Employee computer via e-mail, online VISN 16 Palliative Care Agenda group meeting.

Spinal Cord Injury (SCI) Facts and Figures at a Glance. (2015). Retrieved August 06, 2016, from National SCI Statistical Center, http://www.msktc.org/lib/docs/Data_Sheets_/MSKTC_SCIMS_Fact_Fig_2015.pdf

Taylor, R., & Chadwick, S. (2015). Palliative care in hospital: Why is it so difficult?. Palliative Medicine, 29(9), 770-773. doi:10.1177/0269216315600996

Temel, J.S., Greer, J.A., Muzikansky, A., Gallagher, E.R., Admane, S., Jackson, V.A., Lynch, T.J. (2010, August 19). Early Palliative Care for Patients with Metastatic Non-Small Lung Cancer. The New England Journal of Medicin, 363(), 733-742. Retrieved June 17, 2016 from: http://dx.doi.org/10.1056/NEJMoa1000678

References:

TheFreeDictionaly.com (2015). Clinical death / definition of Clinical death by Medical dictionary. Retrieved from: http://medicaldictionary.thefreedictionary.com/Clinical+death

The Kansas City Star (May, 2014). Appreciating life at death café, Retrieved 05/06/2016 from: http://www.kansascity.com/news/local/article405967/Appreciating-life-at-Death-Cafe.html

Wilson O, Avalos G, Dowling M. Knowledge of palliative care and attitudes towards nursing the dying patient. British Journal Of Nursing [serial online]. June 9, 2016;25(11):600-605.

Wong, P. (2002). From death anxiety to death acceptance. Retrieved May 6, 2016 from: http://meaning.ca/archives/archive/art_death-acceptance_P_Wong.htm