The Last 48 Hours of Life James L Hallenbeck, MD Assistant Professor of Medicine, Stanford University Director of Palliative Care Services, VA Palo Alto HCS

Topics to Discuss Signs and Symptoms in Last 48 hours Coaching of Family A physician’s checklist Death Pronouncement

Self-assessed Knowledge Rating Study Most physicians lack knowledge about the physical changes of dying On a scale of 1-5, the mean self-assessed knowledge rating of interns on physical changes of dying was 1.70 The lowest score of 6 items rating clinical expertise Hallenbeck and Bergen, 1999 J. Palliative Medicine

Signs of Impending Death N=100 Cancer pts. Signs of Impending Death Respiratory Secretions (Death rattle) Median time PTD 23h (82h SD) Respirations with mandibular movement Time PTD 2.5h (18h SD) Cyanosis/mottling Time PTD 1.0h (11 SD) Lack of radial pulse Time PTD 1.0h (4.2 SD) Suggested behavior: If you haven’t see RMM, go out and look at some patients actively dying. Compare them to patients sleeping with a “positive O” sign. Morita 1998

Symptoms and Signs in the Last 24-48 Hours Symptom Percent Noisy, moist breathing 56 Urinary incontinence 32 Urinary retention 21 Pain 42 Restlessness, agitation 42 Dyspnea 22 Nausea, vomiting 14 Sweating 14 Jerking, twitching 12 Confusion 08 N = 200 cancer patients in hospice Lichter and Hunt, 1990

Differences Between Cancer and Non-Cancer Diagnoses Pain 40-100% Dyspnea 22-46% More predictable dying trajectory Non-Cancer Pain ~ 42% Dyspnea ~ 62% Less predictable dying trajectory

The dying trajectory concept first introduced in the 1960’s was recently validated in a study by Joan Teno: J. Palliative Medicine, reference #1 in paper. All sorts of implications for care delivery systems, communication and coaching, as we shall see.

Transition to ‘non-physical’ relationship Sense/desire Family loss Coaching Hunger Nurturing Other ways to nurture Thirst Mouth moist Speech Communication Can still hear… Vision Being seen May be conscious Hearing Being heard Can still feel… Touch Physical presence Transition to ‘non-physical’ relationship Transition to coaching: Three columns – loss in patient, loss in family and coaching. Psychology point: reframing of situation Coaching story – my father’s death

Terminal Syndrome Characterized by Retained Secretions Lack of cough Multi-system shut-down Not always associated with dyspnea Vigorous hydration may flood lungs Deep suctioning is generally ineffective Role of IV and antibiotics is controversial

Physician Checklist Treatment Switch essential medications to non-oral route Stop unnecessary medications, procedures, monitoring Evaluate for new symptoms Pain, dyspnea, urinary retention, agitation, respiratory secretions Family: Contact, engage, educate, facilitate relationship with dying patient, console Yourself Bear witness Of course, this is not just for physicians What systems do you have in place to “check” these kinds of things. Only recently in our hospice team have we begun to systematically review who is taking responsibility for which of these, when a patient is identified as actively dying.

Death Pronouncement Death – not a difficult diagnosis No need for “pupil exam, assessment for pain” Pronouncement – more than a set of bureaucratic tasks – a cultural ritual Rarely modeled by senior staff or attending physicians Teachable skills exist While we tend to view death pronouncement as an event (like death), it is better to think about it, when possible as a process – initial coaching, ritual pronouncement and immediate bereavement support.

Death Pronouncement Skills Anticipate impending death and prepare family If called, inquire re circumstances family present/not, anticipated/not If family present, assess ‘where they are’ Already grieving or need ritual to believe person has died ‘Sacred silence’ Console Next steps Self-care

Death Pronouncement by Phone Avoid if possible Identify where recipient of news is home, on freeway, alone or not Often, like bad news, ‘advance alert’ Slow recipient DOWN, NOT – “you must come right in away” Identify contact person at hospital “Ask for Dr. … or Nurse … System issue to highlight – examine practices in your units/facility: Who usually contacts the family? (If physicians or nurses, what training have they had in how to do this?) How do they inform? Do they do things like identify a contact person?

Summary “Don’t worry, you will all die successfully!” Sogyal Rinpoche If there is a sacred moment in the life-cycle, other than a birth, it is a death As with a birth, families will long remember, how a person died and how we helped or did not We need to re-learn how to coach patients and families through their last 24 hours