Palliative and end of life care with voice over

Palliative CareEnd of Life Care : 

Palliative CareEnd of Life Care NSG 432 Module 4 Winter 2012

Palliative Care : 

A philosophy and a type of care Focuses on quality of life in the face of life-limiting illness Can start long before hospice care can start Can start at diagnosis Interdisciplinary work is essential to success Palliative Care

End of Life Care - Hospice : 

Focus is comfort, quality of life Time focused to the last six-twelve months of life Hospice enrollment can be continued longer than 12 months if need be Focus on is the life of the client & well-being of client’s family, not “death” per se But fear, especially of death, creates opportunities for bad experiences Worry about being a burden, not being able to do the “right thing”, etc End of Life Care - Hospice

Self-reflection : 

Caring for families in end of life situations requires maturity, excellent communication and clinical skills, and emotional stability Need to do own self-reflection work prior to embarking End of life care is truly family centered and collaborative Self-reflection

What do families face? : 

What do families face? Fear Helplessness Fatigue Insomnia Anxiety (unnamed fears) Depression Financial distress Uncertainty and loss of control Physical distress

Bereavement : 

Bereavement Loss continues well after death Care after death is often missing Families often feel: Lost Abandoned Alone Physically and emotionally exhausted Ambivalent

Barriers to Optimal End-of-Life Nursing Care : 

Barriers to Optimal End-of-Life Nursing Care Lack of education in professional nursing programs Delayed referral to hospice Limited focus to end-of-life care in acute settings Exclusion of family members in many aspects of care Lack of support for nurses facing death frequently in their practice Moral distress: Tension between prolonged life vs. quality death

Family Nursing Practice Assessment & Intervention: Making a Connection : 

Family Nursing Practice Assessment & Intervention: Making a Connection Family assessment skills Symptom assessment skills Pain management skills Emotional/psychological support Spiritual support Assessment and care across time and developmental stages of the family and the illness Provision of care that is unique to every family Connection with the families See questions on p282 for ways to start making the connection.

Relieving Patient Suffering : 

Relieving Patient Suffering Symptom analysis and control Symptom discomfort can block quality of life and family connections Nurses need to know how to: Anticipate Recognize Assess Prevent Manage symptoms Nurses need to know how to promote comfort and quality of life

Nursing Care Interventions : 

Optional learning opportunities See articles in ‘supplemental resources’ reading list See powerpoint slide deck (no voice) also posted in Supplemental resources Many CME units available on this topic – check out Medscape NP students – more attention paid to actual medical care in a later course. Nursing Care Interventions

Balancing Hope With Preparation : 

Balancing Hope With Preparation Ambiguity Uncertainty Waiting for “miracles” Support If things do not go as hoped, what is the most important thing to do today?

Sharing Information With Families : 

Sharing Information With Families Information empowers family members. Timing and amount can empower or overwhelm family members. Information needs to be shared based on personal and developmental levels. Provide information in response to questions! Families most often want information on: The trajectory of the disease Symptoms to expect Ways of coping Treatment and intervention options including adaptive equipment What to expect when death is imminent (i.e., “Will there be pain?”)

Facilitate Choices : 

Facilitate Choices Facilitate family discussions about the process of death and dying Facilitate discussions to understand wishes, fears, and needs of each family member Letting the family guide the plan Offering stories of what helped other families in similar circumstances Provide options to complete advance care directives Offering resources and support to provide ideas on options Encouragement to meet family needs

Managing Negative Feelings : 

Managing Negative Feelings Moral distress: When the family wants more care in a hopeless situation Feelings of anger, hopelessness, guilt: Helping family members express negative feelings to avoid suppression or inappropriate displacement Open and honest listening Avoidance of defensiveness Diffusion Assistance from other team members or family members Avoid “fixing” families Non-judgmental and therapeutic communication only!!!

Care at the Time of Death : 

Care at the Time of Death A “Good” Death: Symptom management Clear decision making Preparation for death Contribution from others Affirmation of the whole person A “Bad” Death: Lack of opportunity to plan ahead No opportunity to settle personal affairs High level of family burden No opportunity to say “good-bye” Perception of uncontrolled symptoms (i.e., pain)

Signs of Imminent Death : 

Signs of Imminent Death Increased cognitive impairment Unstable vital signs No food or drink Decreased urine/stool output Pulmonary Congestion/increased secretions Mottling/pallor/cyanosis Edema / anasarca Altered breathing Cool extremities Limited or no blinking Campbell, Margaret, 2009. Nurse to Nurse: Palliative Care Expert Interventions. McGraw Hill. New York Also see table on p293, Box 11-5

Symptom Management : 

Pain is common at end of life Know the meds in use Be aggressive in assessment and management Counsel family on pt refusal of food & drink Expected behavior in last days Forced feeding, hydration not helpful Educate family members on good oral & mucosal care Skin breakdown becomes likely Careful assessment & management is called for Know and use non-pharmacological techniques for anxiety management Symptom Management

At the end : 

Remind families that a dying person may retain ability to hear and understand even when she cannot communicate Always coach family to speak in presence of patient as if the person was fully awake and conscious At the end

Bereavement Care : 

Bereavement Care Family care Support Information and resources Advice – teach awareness of grieving process Grieving process Facilitation of the burial process Often begins at the bedside Staying with the body Taking care of the body in preparation for burial Allowing other family members to come to say “good-bye” Spiritual care (calling a minister or spiritual leader) Collecting momentos (i.e., pictures, foot/hand prints, blankets, etc.) Contact organ donation organizations as appropriate

Children : 

Children Children do best, whether they are the patient or the family member, when communication is open and developmentally appropriate. Visits to family members by children can offer hope and temporary relief from pain. Children can and do cope with visiting seriously ill family members.

CPR and Family Care : 

CPR and Family Care More and more families are requesting to stay present during CPR. Their presence is felt to be a source of strength. They can see that everything is being done. It is often their last chance to see their loved one alive. Be prepared to help them process the experience

At the end : 

Family members often recall it was the nurse who was there when their loved one died. At the end Read case study on p 297 for good example – Jones family with mother with advancing MS…

Last Slide : 

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