Working with and Identifying the

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Transcript Working with and Identifying the

Death and Bereavement: Somebody’s Gotta Talk About it

Indiana University School of Social Work Alumni Conference

Why Do I Think It’s Important for Social Workers to Know These Basics?

• I had patients die before and was lost • We’re all going to encounter it in some way regardless of setting • Now that I work in hospice I think EVERYONE should know this stuff!

Why Are We So Hesitant to Discuss Death?

• Cultural taboo • Forces us to face our own mortality • Fear of offending, scaring or angering our clients and families • What the heck are we supposed to say?

• Lack of expertise

The Needs of the Dying

• David Kessler • “The best way to treat a dying patient is to remember that he or she is still a living patient” • Focus on cure often ignores the spiritual, physical, emotional and cognitive aspects of dealing with a terminal illness/injury

The Needs of the Dying

The need to be treated as a

living

human being

The Needs of the Dying

The need to maintain a sense of

hopefulness,

however changing it’s focus may be

The Needs of the Dying

The need to express feelings & emotions about death in one’s own way

The Needs of the Dying The need to participate in decisions concerning one’s care The need to have all questions answered honestly & fully The need for continuing medical care

The Needs of the Dying The need to be free of physical pain The need to be cared for by compassionate, sensitive & knowledgeable people

The Needs of the Dying

The need to express feelings & emotions about pain in one’s own way

The Needs of the Dying The need to seek spirituality The need to die in peace & dignity The need not to die alone The need to know that the sanctity of the body will be respected after death

Spiritual Realm

• Is there an afterlife? If so, what is it?

• Deathbed visitations, hallucinations, hauntings, angels • Near death experiences

Symptoms of Dying

• Increased sleeping • Decreased eating • Memory loss • Decreased urine • Difficulty with or changes in breathing • “Death rattle” • Agitation or restlessness • Involuntary sounds or movements • Skin color changes

Suffering

• Can it be alleviated?

• Is it valuable to the patient in some way?

• Emotional, spiritual, mental or physical • Unfinished business “Suffering, if it is accepted together, borne together, is joy.” – Mother Teresa

Legacy Projects

• Tailored to the patient • Patient directed • Often the role of the social worker • Can help with symptom control for some • Wide variety in size, scope, focus

Professional Interventions & The Power of Presence

• Concrete Interventions • Assessments • Clinical Interventions • Presence

Death Ideation vs Suicidal Ideation

• Both can occur • Both require attention • Are not the same and should not be handled as such

What is Normal Grief?

Physical Symptoms

• Hyperactivity or under active • Chest pain • Headaches • Stomach pains/nausea • Change in appetite • Weight changes • Fatigue • Sleeping problems • Restlessness • Crying • Sighing • Shortness of breath • Tightness in the throat • Changes in coordination

What is Normal Grief?

Emotional Symptoms

• Numbness • Sadness • Anger • Fear • Relief • Irritability • Guilt • Longing • Anxiety • Meaningless • Apathy • Vulnerability • Abandonment • Loneliness

What is Normal Grief?

Social Symptoms

• Being overly sensitive • Becoming more dependent on others • Becoming withdrawn • Avoiding others • Lack of initiative • Lack of interest

What is Normal Grief?

Behavioral Symptoms

• Forgetfulness • Searching for the deceased • Slowed thinking process • Disturbing dreams • Sensing the deceased presence • Wandering aimlessly • Avoiding talking about it in fear of making others uncomfortable • Needing to retell the story of the loved one’s death

Grief Theory

• Freud – pathological, get over it • Kubler-Ross – five traditional stages • Bowlby and Parkes – four phases + attachment theory • Worden – four “tasks” not stages • Wolfet – companioning the bereaved • Neimeyer – narrative and constructivist • Maciejewski et al – recent Yale Bereavement Study

Primal Response

• Grief served an evolutionary purpose • Fight or flight • Reactions trigger by reptilian parts of brain as with other traumatic experiences

Complicated Bereavement

• When grief gets in the way of one’s ability to accomplish required tasks of daily life • When symptoms of grief are severe and persistent • When one is unable to cope with the loss after an extended period of time.

Why Assess for Risk

• You may be completely unaware of the losses that your patients are experiencing • Identify if somatic complaints are grief related • Identify supports that can be put into place • Implement appropriate medical interventions • Provide support and education

What Should a Risk Assessment Explore?

• Loss history – divorce, miscarriage, death, moving, job loss, etc.

• Available supports – emotional, spiritual, resources, within the community • Health history – known medical and mental health concerns • Emotional stability – level of dependence, anger, acceptance • Considerations for children • Circumstances surrounding death • Course of illness

When to Assess for Risk?

• Time of diagnosis • When subsequent losses occur • Changes in prognosis or patient’s condition • When death occurs • After initial impact of death has “sunk in” • Frequent updates to assessment is ideal

When is it More Than Grief?

• Diagnostic standards • Practical implications • Overlapping symptoms with depression, anxiety, attachment disorders, post traumatic stress disorder • Wishing for death

How Does Grief Impact Health?

• Grief is stressful!

• Exacerbates existing health concerns • May trigger previously unidentified medical problems • Can intensify mental health concerns • Behavioral implications that impact health

Anticipatory Grief

• But the person isn’t dead yet!

• Can serve a very useful, protective purpose • Can help to identify problems that may be carried over to the typical course of bereavement

What Can We Do to Help the Bereaved?

• Listen to the story – even if you think you know the story • Don’t try to plan solutions – help to identify supports and resources instead • Be with the grieving • Ask meaningful questions • Try to be comfortable when discussing the loss • Be aware of non-verbal communication, word choice and tone of voice

What Can I Say?

• I am so sorry for your loss.

• I wish I had the right words. Please know I care.

• I don’t know how you feel, but I am here if I can help in any way.

• You and your loved ones will be in my thoughts and prayers.

• My favorite memory of him is… • I am always just a phone call away.

• We all need help at times like this. I am here for you.

• I am usually up early and stay up late.

• Don’t talk – Just be with them. Hugs can be very powerful.

What Not to Say

• At least she lived a long life. Many people die young.

• He’s in a better place.

• She brought this on herself.

• There is a reason for everything.

• You can still have another child.

• It was God’s will.

• You’ll get over it.

• She’s better off this way.

• Be strong.

• Aren’t you over him yet? He’s been dead for a while now.

• She was such a good person. God wanted her to be with Him.

• You think that’s bad? My loved one… • It was her time.

• It was just a miscarriage.

• I know how you feel.

• Tears won’t bring him back.

• You’re still young.

Encourage Self Care

• Be patient with one’s self • Ask for and accept help • Talk to others • Recognize that bad days will come • Rest • Schedule fun and rest • Journaling • Eat regularly • Schedule time with others • Exercise • Keep a routine • Engage in old or new hobbies • Welcome new experiences • Take care of something else – a plant or pet for example • Drink plenty of water • Plan for alone time

Grief Impacts Professionals, Too!

• Medical professionals are exposed to death and suffering more often • Loss is cumulative • Impacts personal and professional relationships • Your own self care is important!

What Can We Do To Better Support Professionals?

• Reduce stigma associated with professional grief • Explore systemic changes that understand grief and offer supports • Model appropriate interactions with patients and families for others • Engage in good self care

Struggling and Need Help?

• Natural sources of support – formal and informal mentors, coworkers, family members • External resources – community mental health providers, funeral homes, hospital or hospice providers • Reach out – if you can’t find a group that works for you help to make one. You can’t be the only one!

Bibliography

American Academy of Bereavement: Bereavement Facilitator Level 1 – Training Program. 2004: www.bereavementacademy.org

Brietbart, W., Gibson, C., Poppito, S., Berg, A. Psychotherapeutic Interventions at the End of Life: A Focus on Meaning and Spirituality. Can J Psychiatry, 2004; 49 (6), 366-372.

Bruce, C. (2007). Helping patients, families, caregivers, and physicians in the grieving process. Journal of the American osteopath association,107(12), 33-40.

Campbell, K. (n.d.). Grief and loss in medicine: The role of physicians in helping families find closure. Retrieved from http://whvheart.com/grief-and-loss-in-medicine-the-role-of-physicians-in-helping-families-find closure Carmichael, M. (2005). Bereavement assessment in palliative care - identifying those "at risk". Scottish journal of healthcare chaplaincy, 8(2), 21-25 Carroll, L. Died of a broken heart? The science behind close couple deaths. Today; August 28,2013. www.today.com/health/died-broken-heart-science-behind-close-couple-deaths-8C11018276 Chassiakos, Y. R. (2012, February 27). In practice: Doctors bury grief to help patients and families. Los Angeles Times. Retrieved from www.latimes.com

Doctors Feel Grief, Too. (2013, June 19). Retrieved from http://www.adivsory.com/daily briefing/2013/06/19/doctors-feel-grief-too

Doctors need support to help them deal with grief and emotional disturbance they may experience. (2007, September 13). Retrieved from http://www.news-medical.net/news/2007/09/13/29791.aspx

Don, K. “Spiritual Doorway in the Brain”: The science of near-death experiences. Salon;January 13, 2011. http://www.salon.com/2011/01/13/near_death_experience_interview/ Duminiak, C. Grief healing and the power of aferlife signs. Open to hope; April 3, 2013. http://www.opentohope.com/grief-healing-and-the-power-of-afterlife-signs/ Dyer, K. (2013, October 23). Understanding the impact of loss & grief on our patient's well being: Learning how to take a loss history. Retrieved from http:www.mommd.com/loss.shtml

Granek, PhD, L., Tozer, MD, R., Mazzotta, MD, CCFP, MSc, P., Ramjuan, BHSc, A., & Krzyzanowska, MD, MPH, M. (2012). Nature and impact of grief over patient loss on oncologists' personal and professional lives. Archives of internal medicine, 172(12), 964-966.

Hodgekiss, A. You really CAN die of a broken heart: Surviving spouses have a 66% higher risk of dying in the three months after their partner’s death. Daily Mail; November 15, 2013. www.dailymail.co.uk/health/article-2507829/You-really-CAN-die-broken-heart-Surviving-spouses-66-higher-risk dying-months-partners-death.html

Johns Hopkins Medicine. Frequently asked questions about broken heart syndrome. www.hopkinsmedicine.org/asc/faqs.html

Kessler, D. The needs of the dying. Harper Collins; New York, NY: 2001.

Kessler, D. , Kubler-Ross, E. On grief and grieving. Scribner; New York, NY: 2005.

Kubler-Ross, E. Questions and answers on death and dying. Collier Books; New York, NY: 1974.

Lee, T. Broken heart syndrome. Harvard Medical School; January 27, 2012.

www.intellihealth.com/article/broken-heart-syndrome?hd=Healthy Physical stress of caregiving. Retrieved from http://connect.legacy.com/inspire/page/show?id=1984035%3APage%3A252 Petersen, Freya. Grief can trigger myocardial infarction, or heart attack, study finds. Global Post; January 11, 2012. www.globalpost.com/dispatch/news/health/120111/myocardial infarction-grief/broken-heart/syndrome-cardio-us-news Sansone, R. A., & Sansone, L. A. (2012). Physician grief with patient death. Innovations in clinical neuroscience, 9(4), 22-26.

Shepherd, Rupert. A broken heart breaks your heart, literally! Medical News Today; 2012. www.medicalnewstoday.com/articles/240135.php

Symptoms of grief. (n.d.). Retrieved from http://www.griefwatch.com/symptoms-of-grief Thoma, M. Cause of death: Broken Heart (it’s an actual syndrome, and can kill you). America Blog; October 31, 2013. http://americablog.com/2013/10/you-can-literally-die-of-a-broken-heart.html

Yahoo Answers. Can you die of a broken heart?

http://answers.yahoo.com/question/index?qid=20130827203107AAjQ4nl What Can I Say?. (n.d.). Retrieved from http://www.griefjourney.com/wp/what-we-offer/for-professionals-and caregivers/articles

“Grief is like the ocean; it comes in waves, ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” Vicki Harrison