1 1

Palliative Medicine & Donor Alliance: We Improve Lives Carey Ramirez, ANP-C Palliative Medicine Service University of Colorado Health North December 8, 2015

What is Palliative Medicine? A medical specialty… – Focus on quality of life Relief of suffering – Pain – Symptoms – Stress » Spiritual » Emotional » Psycho-social – For people facing chronic or serious illness Appropriate at any age or any stage regardless of diagnosis Can be provided alongside curative treatment – Add an extra layer of support and expertise Patient and family as one unit (1) 3

What is Palliative Medicine? A medical specialty… – Focus on quality of life Assess patient understanding of their medical condition – Improved understanding of the big picture Facilitate communication – Hopes, fears, and expectations – What is most important to the patient? » Survival, at what cost? Improved ability to tolerate treatment » Quality of life Connects what is important with achievable outcomes – Maintenance of hope 4

More on Palliative Medicine… Assist patients in navigating the health system Interdisciplinary Team – Physician, Nurse Practitioners, Social Worker – Chaplaincy, Case Management, and Counseling Our goal… – For you: maximize your ability to LIVE life to its fullest and according to YOUR goals and values – For our community: high quality, well coordinated care tailored to patient values leading to lower costs 5

An important distinction… 6

Hospice & Palliative Nurses Association Position Statement – Hundreds of thousands of Americans suffer progressive chronic or serious life-threatening illnesses, which might be alleviated with appropriate organ and tissue donation. – Palliative care providers have the skills needed to inform, educate, and support patients/families in the role and need of organ and tissue donation in collaboration with the state organ procurement organization. – Education and information regarding the donation of organs must be discussed with the patient in the context of advance care planning and advance directives. – Palliative care providers have the skills to ensure excellent symptom management and comfort care to the dying patient during the time of withdrawal of life support and after. – Palliative care providers, which includes hospice, need to adopt policies for promoting and obtaining organ and tissue donation when possible. – Education and research regarding the roles palliative care may play to support organ donation need to be initiated. – Organ procurement organizations need to partner with palliative care providers to help improve organ and tissue donation as appropriate. – The standard of care should be followed in withdrawal of life support as for any other patient and that palliative measures are not intended to hasten death. – Only designated requestors can approach family regarding organ donation, not hospice and palliative nurses as permitted by state law and organizational policy. (2) 7

American Academy of Hospice & Palliative Medicine Palliative care providers can use best practices in communication and avoid the pitfalls that are common in brain-death notification. Effective communication and education have been shown to help family members process complex medical information and also help with the bereavement period. Recent studies with bereaved family members of patients diagnosed with brain death show that there are still major gaps in palliative care services offered to this group. (3)

Role of the Palliative Medicine Service Once the DCD protocol is initiated, a palliative consult should be placed if they are not already involved. If the chaplain or counselor have already worked with patient family, they may introduce the palliative team member to the family. Goals – Manage the physical care of the patient expertly. – Advocate for and provide comfort to the family. – Continue care for patient if death does not follow within 60 minutes. Begin discussion about the patients life and role. (4) – What brought patient joy? – Use relationship descriptor such as “your husband or sister.” – Was the patient giving? – Empathetically facilitate communication eliciting patient goals and values, thus leading to consensus among all interested parties and document decision. 9

Role of the Palliative Medicine Service Determine who will be present during compassionate extubation and plan for their needs. Prepare the family for what to expect, then act as their guide advocating throughout. Encourage the family to share what is on their heart specifically offering good bye, I love you, I forgive you, please forgive me, and thank you. Normalize what they see. Determine who will notify family members outside the OR? Re-assure them that Palliative Care will still provide care until death Support private, respectful, and meaningful time for family – Music, prayer, and cultural rituals (4) Quilt program – family may place it and then take it home. 10

Compassionate Extubation RN from ICU may accompany patient to OR. – Discuss plan including meds and how distress will be managed beforehand Preparations – Maintain IV access, turn off all alarms and monitors, discontinue blood pressure medications, paralytics, and all treatments not needed for comfort. Order Set Administer Glycopyrrolate 0.2 mg IV once 45 min prior – Opioid naïve patients Administer Morphine 2-10 mg IV bolus or equivalent 45 min prior followed by an infusion of 1-5 mg/hr. Administer Versed or Ativan 1-2 mg IV bolus 45 min prior followed by an infusion of 1-2 mg/hr. – Opioid tolerant patients For patients on continuous opioids or benzodiazepines, give a bolus two times the hourly rate and increase the hourly infusion rate by 30%. (5) 11

Compassionate Extubation Order Set Continued… – Once patient appears comfortable, extubate. – If distress ensues after extubation, aggressive symptom control is imperative. Use Morphine 5-10 mg IV every 10 minutes PRN (or 10% of patient daily infusion rate) Use Versed 2-4 mg IV every 10 minutes PRN Adjust both infusion rates up in 30% increments until distress is relieved. – Goal: Keep RR < 28 and eliminate grimacing and agitation. Death occurs as a complication of the underlying disease. The goal of care is to relieve the suffering of a dying patient, not to hasten death. (5) 12

Compassionate Extubation Dosing of medications is to be determined by patient comfort needs; any dose needed to achieve patient comfort is acceptable, even if it unintentionally hastens death (double effect). Compassionate extubation is a medical procedure that requires the same degree of provider participation, skill, and quality as other procedures. A provider, respiratory therapist, and nurse should ideally be present during extubation. Mechanical ventilation should not be withdrawn during the administration of neuromuscular blockade as these will mask signs of distress. Comfort medication is not necessary for compassionate extubation of a brain dead patient. (5) 13

Don’t Forget… Palliative medicine personnel may simultaneously engage in life review in an attempt to assist the family in finding meaning. Explore relationships, generosity of the patient, and values leading to the sharing of important moments or events. Cultivate hope, honor, purpose which may be seen as early bereavement therapy. Once death is pronounced, escort the family to a quiet room. – Provide information on community resources for bereavement counseling. Arrange for debriefing of the staff. (4) 14

Works Cited (1) Meier, D. E., (2014). THE CASE FOR HOSPITAL PALLIATIVE CARE. Center to Advance Palliative Care. Retrieved at: (2) ROLE OF PALLIATIVE CARE IN ORGAN AND TISSUE DONATION. (2013). Retrieved at: hpna.advancingexpertcare.org/.../Role-of-Palliative-Care-in-Organ-and-tissue-donation. (3) Lustbader, D., Frankenthaler, M. LIFE AFTER DEATH: WHAT EVERY PALLIATIVE CARE PROVIDER SHOULD KNOW ABOUT ORGAN AND TISSUE DONATION. American Academy of Hospice and Palliative Medicine. Retrieved at: aahpm.org/.../Lif...CachedCached (4) Kelso, C. M., et al. (2007). PALLIATIVE CARE CONSULTATION IN THE PROCESS OF ORGAN DONATION AFTER CARDIAC DEATH. Journal of Palliative Medicine, 10-1 ( ). (5) Quill, T. E., et al. (2014). PRIMER OF PALLIATIVE CARE. American Academy of Hospice and Palliative Medicine. ( ). Other Helpful Reading: Prommer, E. (2014). ORGAN DONATION AND PALLIATIVE CARE: CAN PALLIATIVE CARE MAKE A DIFFERENCE? Journal of Palliative Medicine, 17-3 ( ). 15

“No work is insignificant. All labor that uplifts humanity has dignity and importance and should be undertaken with painstaking excellence.” ― Martin Luther King Jr.Martin Luther King Jr. 16