End of Life Care: Spiritual Aspects in Home Based Palliative care

“Healing The Whole”(Home Health Rotation Feedback)

Dr.M. Mataro HingorjoResident Year 04

Family Medicine AKU Karachi Sindh

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Rotation in final year residency Three days in a week for one month Once per week : Saturday Cover My Rotation period: February 2015 Supervisor: Dr. Faizan Qaiser, SMO, Family Medicine

Department

Introduction: Rotation

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Any diagnostic, therapeutic, or social support service provided

in the home OR Home health care offers the opportunity to provide care that

takes into consideration patients’ home lives, living situations, chronic illnesses, and functional limitations and aims to deliver patient-centered care.

Introduction: Home Health

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Hospital Inpatient Referrals Palliative Care Referrals from oncology/palliative care clinics Geriatric Clinic Referrals Consulting clinic Referrals Self Referrals Patient to patient Referrals Hospice/Nursing homes Follow up Visits

Types of Referrals

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What is Palliative Care?

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88 year old lady, diagnosed patient of CA Endometrium,

known to palliative care services for past 06 months HBPC physician called by family to Visit As she has become more irritable and screams at times…….!! Patient says, She feels that some body is calling her ,She is

afraid of that She further says she is angry with God How will you approach to that patient? How will you counsel the family?

Patient Problem

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Whole Person Approach/Respect humanity of each individual Multifactorial Pain = Suffering Physical/Emotional/Psychological/Social/Spiritual All dimensions should be treated equally Team Approach= Multiple expertise Respect for dignity and inherent value of eachhuman being

Bio Psycho-socio-spiritual Model

Puchalski CM, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, et. al.: Improving the quality of spiritual care as a dimension of palliative care: The Report of the Consensus Conference. J Palliate Med 2009; 12(10):885-904. 7

Spirituality is the aspect of humanity that refers to

the way individuals seek and express meaning and purpose of their existence

the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred


Spirituality: Meaning?

meaning: activities, values that are meaningful but don’t define

ultimate purpose/value in life Ultimate Meaning: values, beliefs, practices, relationships,

experiences, that lead you to the awareness of the sacred or significant, to sense of ultimate purpose

halski CM, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, et. al.: Improving the quality of spiritual care as a dimension of palliative care: The Report of the Consensus Conference. J Palliate Med 2009; 12(10):885-904. 9

Meaning v/s meaning

Interventions, individual or communal, that facilitate the ability

to express the integration of the body, mind, and spirit to achieve wholeness, health, and a sense of connection to self,

others, and[/or] a higher power.

American Nurses Association, & Health Ministries Association. (2005). Faith and community nursing:Scope and standards of practice. Silver Spring, MD: American Nurses Association. 10

Spiritual Care

Cues Spiritual Diagnosis“My life is meaningless”“I feel useless”

Existential

Why would God take mylife… its not fair”

Anger at God or others

“I want to have a deeperrelationship with God”

Concerns about relationship withHigher being

“I am not sure if God is with meanymore”

Conflicted or challenged beliefsystems

Spiritual, Religious And Existential Aspects Of Palliative Care, Journal Of Palliative Medicine 2005 11

Spiritual Cues in the History

Cues Spiritual Diagnosis“Mere liye kuchh naheen bacha dunya meen”

Despair/ Hopelessness

“Mere apne kaise chhor sakta hoon” Grief/loss“I do not deserve to die painfree” Guilt/shame“Meen sab ko maaf karta hoon, mujhe bhi maaf kiya jae”

Reconciliation

“Meen is halat men ibadat naheen kar sakta dr sahib”

Religious specific

“What if all that I believe is nottrue”

Religious/SpiritualStruggle

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Spiritual Cues In History

Physical: Progressive Disease, Worsening Symptoms Psychological: Stress, Depression, Psychosis Social: Good Family support, Wants to see her grand children

living in USA before death, Worried about her husband Spiritual: Distress, Angry with God, feels relief with Tasbih,

thinking about Khana Kaaba, Worried about death, wanted to discuss death with family/Alwaiz

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Back To Our Patient: Issues

Impaired ability to experience and integrate meaning and

purpose in life through connectedness with self/others, art, music, literature, nature, and or a power greater then oneself/some one significant

Clinical Spiritual Distress

Nanda-2007Puchalski CM, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, et. al.: Improving the quality of spiritual care as a dimension

of palliative care: The Report of the Consensus Conference. J Palliate Med 2009; 12(10):885-904. 14

1. What is the reason of fear?2. What do u think, who would be calling you?3. Do you think of Death at times?4. Which feelings surface when you think about your death?5. Know for sure where you are going when you die?6. Satisfied with ultimate destination? 7. If you could choose, how would you like to die?8. Which way of dying is the most unacceptable to you?9. Which person most difficult to leave behind when you die?10.Which things most difficult to leave behind?11.Adequate preparations regarding your own death and burial?

Discussing Death


1. Good relationship with God/Some one significant2. Clear conscience3. Hope4. Meaning5. Purpose6. Life concluded with no loose ends7. Prepared for the transition

The Dying Person: 7 Basic Spiritual Needs

Puchalski CM, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, et. al.: Improving the quality of spiritual care as a dimension of palliative care: The Report of the Consensus Conference. J

Palliate Med 2009; 12(10):885-904. 16

Define Goals of Treatment to patient and family Family support Compassionate presence and follow up Reflective listening/query about important life events—spirituality as connection Support patient sources of spiritual strength and note in chart Explore sources of hope/meaning Connect patient to community spiritual resources Referral to chaplain/Alwaiz/Pandat or other spiritual care professional/Spiritual

Leader Self practiced spiritual rituals

Puchalski CM, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, et. al.: Improving the quality of spiritual care as a dimension of palliative care: The Report of the Consensus Conference. J Palliate Med 2009;

12(10):885-904. 17

Management: Interventions by Physicians

Every patient should be screened for spiritual distress Clinicians should include a spiritual history as part of the

routine history Spiritual issues, distress, resources of strength should be

identified and documented in patient chart and followed up appropriately

Spiritual Care Provider should be the integral part of healthcare team and should be the trained in clinical spiritual care

Recommendations


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82 year old lady, known Hypertensive, Diabetic, diagnosed

patient of Renal Cell CA, S/P nephrectomy, mates in urinary Bladder/bones (S/P radiotherapy, Chemotherapy, S/P cystoscopy)

Referred to Home Based Palliative Care Team in late February 2015 for pain management at home

Patient Problem

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Patient is more sleepy Not eating/drinking Altered mentation Changes in breathing patterns/ slow and fast breathing Unstable Oxygen saturation Talking with someone who is already dead Blood Pressure changes (some times high/some times low) Calling kidsAll for past one day………….!!!

Complains

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Family is in panic state They want their patient back in baseline status Not properly counseled by primary physician We were having first encounter with patient and family

Issues

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Increased pain Changes in blood pressure, respiratory rate, oxygen saturations and heart

rate Continued loss of appetite and thirst and difficulty taking medications by

mouth Decline in bowel and bladder output Changes in sleep-wake patterns Temperature fluctuations that may leave the skin cool, warm, moist, or pale Constant fatigue Congested breathing Disorientation or seeing and talking to people who aren't there

The Period of Transition

American Cancer society 23

Breaking Bad News:

The SPIKES Protocol

SETTING UP the interview Assessing patient’s/Family’s PERCEPTION Obtaining the patient’s/Family’s INVITATION Giving KNOWLEDGE and information Addressing the patient’s/Family’s EMOTIONS STRATEGY and SUMMARY

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25% Psychiatric morbidity is found in Palliative Care physicians

ABC of Palliative Care 25

House Keeping

Health & Medicine

End of Life Care: Spiritual Aspects in Home Based Palliative care