Care of the Imminently Dying

1. Care of the Imminently Dying

2. Care of the Imminently Dying • How do patients with advanced illness die? • Predicting a short survival • Recognizing and managing active dying • Approach to the patient at the end of life • Communication and family caregivers

3. Care of the Imminently Dying • How do patients with life-limiting illnesses die? • An acute complication brings on rapid decline to active dying • Progressive chronic illness brings on steady decline into active dying

4. Care of the Imminently Dying • Acute complication changes prognosis from “could be weeks or months” to “could be hours or days”

5. Care of the Imminently Dying • Acute complications can be an expected part of the disease • Exacerbation of heart failure • Exacerbation of COPD • Decline after stopping dialysis

6. Care of the Imminently Dying • Other acute complications • Sepsis • Hemorrhage • Pulmonary embolism • Hepatic encephalopathy • Stroke

7. Care of the Imminently Dying • When an acute complication occurs • Review the plan of care for the patient and the family • Intervene appropriately • Communicate with the family to inform, provide support, make plans, and assess for family-oriented care

8. Care of the Imminently Dying • How else do patients with life-limiting illnesses die? • Progressive chronic illness brings on steady decline into active dying • Can occur over weeks or longer • Often not appreciated by physicians, who usually overestimate prognosis • Implications often not understood by caregivers • Offers a longer period to intervene therapeutically, if recognized by the clinician

9. Identifying Patients Likely To Die “Very Soon” • The challenge • Clinical prediction of survival in patients with cancer is poor until the last 1-4 weeks before death • Clinical prediction of survival in patients with other diseases is poor even days from death

10. Identifying Patients Likely To Die “Very Soon” • Performance status has been used to enhance clinical prediction of survival • Performance status scales • Karnofsky Performance Status scale • Palliative Performance Scale • ECOG scale • By themselves, these scales are helpful but not sufficient

11. Identifying Patients Likely To Die “Very Soon” • Palliative Performance Scale • Study of 466 hospice patients • PPS of 30-40 • 58% died within 1 month and 80% died within 3 months • PPS of 50-70 • 33% died within 1 month and 69% died within 3 months • Overall, somewhat more predictive for noncancer vs. cancer diagnoses, and for NH vs. non-NH residence (Harrold et al, 2005)

12. Palliative Performance Scale

13. Identifying Patients Likely To Die “Very Soon” • Cancer studies have shown that some symptoms and signs also suggest short survival • Dyspnea • Dry mouth • Trouble swallowing • Loss of appetite • Weight loss • Cognitive impairment Vigano et al, 2000 Important “oral intake” cluster

14. Identifying Patients Likely To Die “Very Soon” • Tools have been developed to enhance prediction of survival • Palliative Prognostic Score (PaP) • Clinical Prediction of Survival (CPS) • Karnofsky Performance Status • Anorexia • Dyspnea • WBC count • Lymphocyte percentage

15. Identifying Patients Likely To Die “Very Soon” • Tools have been developed to enhance prediction of survival • Palliative Prognostic Index (PPI) • Palliative Performance Scale • Oral intake • Edema • Dyspnea at rest • Cognitive impairment

16. Identifying Patients Likely To Die “Very Soon” • Bedside perspective: What should experienced clinicians assess? • First, declining performance status • PPS score • More time in bed or chair • More help needed in ADLs • More time drowsy or asleep

17. Identifying Patients Likely To Die “Very Soon” • Bedside perspective: What should experienced clinicians assess? • Second, specific symptoms/signs • Dyspnea • Dry mouth, trouble swallowing, loss of appetite, weight loss • Swelling • Change in cognitive status

18. Identifying Patients Likely To Die “Very Soon” • Bedside perspective: What should experienced clinicians assess? • Change in cognitive status • Periods of confusion or restlessness • Periods of anxiety or “flat” affect • Social withdrawal, with less interest in interaction or conversation

19. Care of the Imminently Dying • When there are changes suggesting that death may occur “very soon” • Review the plan of care for the patient and the family • Intervene appropriately • Communicate with the family to inform, provide support, make plans, and assess for family-oriented care

20. Identifying Patients Who Are Actively Dying • Physiologic changes occur in the hours before death • Called “active dying” • Occur whether or not an acute complication has caused decline • Must be recognized to prepare family and optimize care plan

21. Identifying Patients Who Are Actively Dying • Physiologic changes occur in the hours before death • Declining responsiveness • May look like sleep (coma) or may occur with eyes open • Response to voice and contact lessens until there is none • Occasionally, active dying associated with agitation unless managed

22. Identifying Patients Who Are Actively Dying • Physiologic changes occur in the hours before death • Muscle tone often decreases (more flaccidity) • May be myoclonic jerks • Incontinence may occur • Urinary output ultimately declines

23. Identifying Patients Who Are Actively Dying • Physiologic changes occur in the hours before death • Breathing often changes • May be shallow and rapid; sometimes slowed • Often Cheyne-Stokes respiration, with apneic periods • Often becomes noisy as airway congestion occurs from secretions that are not cleared • If loud, called “death rattle”

24. Identifying Patients Who Are Actively Dying • Physiologic changes occur in the hours before death • Extremities become cool • Skin of the extremities often mottled or cyanotic • Skin of the face and body may change • May have mild cyanosis (“bluish”), pallor, or flushing • Sometimes “yellowish” • Sometimes with increased sweating

25. Identifying Patients Who Are Actively Dying • Physiologic changes occur in the hours before death • If vital signs are taken • Blood pressure usually low • Pulse usually increased • Temperature may be increased or decreased • Respirations may be increased or decreased

26. Care of the Actively Dying Patient • Managing the actively dying patient • Patient issues • Caregiver issues

27. Care of the Actively Dying Patient • Key concerns • Treat symptoms/disorders associated with patient/family distress • Declining consciousness means less symptom distress, but assessment is essential • Pain can manifest as moaning, grimacing, rapid breathing or pulse, restlessness • Drugs, e.g. an opioid, justified by any indication of distress • Noisy respirations managed with positioning, pulmonary toilet, and anticholinergic drugs

28. Care of the Actively Dying Patient • Key concerns • Understand and manage terminal delirium

30. Care of the Actively Dying Patient • Terminal delirium • Early signs that progress • Restlessness • Anxiety • Sleep disturbance: Insomnia, drowsiness, sleep reversal • Tremulousness • Poor concentration and attention • Illusions/hallucinations

31. Care of the Actively Dying Patient • Terminal delirium: management • Consider reversible causes, e.g., hydration • Environmental interventions, e.g. position near window, remove objects from the room, person at the bedside • Neuroleptic therapy, e.g., haloperidol • Sedative/hypnotic for agitation, e.g., lorazepam • Discuss prognosis and goals of treatment with caregivers

32. Care of the Actively Dying Patient • Other key concerns • Reassess decision making • If the patient has decisional capacity • Is the patient in the discussion about goals and treatments? • What is the status of communication within the family, between the family and professional caregivers, and professional caregivers • If the patient lacks capacity • Who is the agent or surrogate? • Are there oral or written advance directives concerning treatments? • What is the status of communication within the family, between the family and professional caregivers, and professional caregivers

33. Care of the Actively Dying Patient • Other key concerns • Reassess goals of care • What treatments are available and medically appropriate—is there a need for physician evaluation? • What are the patient’s expressed wishes, and what are his/her broader values and preferences?

34. Care of the Actively Dying Patient • Other key concerns • Should the patient stay at home? • Is there a need for more aggressive symptom control that would be difficult to accomplish at home? • Are there appropriate disease-modifying treatments that must be given in the hospital? • What are the patient’s expressed wishes about hospitalization? • Can the family cope? • Can excellent palliative care be delivered at home using continuous care with MD/RN support?

35. Care of the Actively Dying Patient • Other key concerns • Role of “palliative sedation” • Definition • A medical treatment by which a patient who is believed to be near the end of life is given a drug with the goal of producing sedation sufficient to relieve suffering • Considered for distress at the end of life when routine interventions have not worked • An ethical practice if intended to relieve suffering (double effect); is it NOT euthanasia or assisted suicide • Requires open discussion • Can be done at home

36. Care of the Imminently Dying • Key concerns • Communication • Informed by the medical facts of the case • Respectful of culture and values • Sensitive to the potential for distress

37. Care of the Imminently Dying • Key concerns • Goals of communication • Assess need for grief intervention • Assess need for more information • Assess need for practical help through hospitalization, continuous care, HHA • Provide emotional support through active and empathic listening

38. Care of the Imminently Dying • Common barriers to communication • Cultural Barriers • Psychological Barriers • Listening Barriers • Language Barriers (AAHPM 2011 Unipac)

39. Care of the Imminently Dying • Cultural Barriers • Lack of experience with death • Unrealistic expectations of the healthcare system • Cultural beliefs regarding disclosure of information • Trust • Family involvement in decision-making (AAHPM 2011 Unipac)

40. Care of the Imminently Dying • Psychological Barriers • Patient’s Fears • Dying • Physical symptoms • Psychological effects • Loss (of self, control, freedom, hope), separation, isolation, fear, sadness, feeling of being a burden • Treatments • Financial matters • Changes in roles

41. Managing Imminent Dying: Caregiver Issues • Psychological Barriers • Clinician’s Fears • Fear of illness or death • Fear of lacking knowledge • Fear of eliciting an emotional response • Fear of expressing emotion • Fear of doing harm

42. Care of the Imminently Dying • Psychological Barriers • Family’s fears • Physical care and emotional distress • Loss – attachment/separation issues • Financial repercussions • Role changes

43. Care of the Imminently Dying • Listening Barriers • Judgment and evaluation • Assumption and certainty • Limited attention span

44. Care of the Imminently Dying • Language Barriers • Medical language • Limited language skills • Vocabulary

45. Care of the Imminently Dying • Strategies to encourage communication • Have awareness about nonverbal communication • Have multiple short conversations • Speak in a calm tone • Talk honestly and openly • Demonstrate willingness to have difficult discussions • Explore/ask questions

46. Care of the Imminently Dying • Strategies to encourage communication • Listen actively • Express empathy • Acknowledge • Clarify • Reassure • Validate (AAHPM 2011 Unipac)

47. Care of the Imminently Dying • Strategies to encourage communication • Explore understanding and coping • Ask what the patient/family/caregiver understands about their illness, possible symptoms and/or what the doctor has told them • Assess the patient’s/family’s/caregiver’s emotional functioning • Allow the patient/family/caregiver to maintain control, and let you know how much discussion they can tolerate

48. Care of the Imminently Dying • Strategies to encourage communication • Normalize concerns • Acknowledge difficulty of talking about a serious illness and the process of dying • Most of us fear death and suffering • Unrealistic thinking that sometimes occurs like protecting loved one and themselves from imminent realities … by not talking about death then we are preventing it. • Normalize detachment or wanting relief from suffering • Hard to imagine not caring for your loved one (AAHPM 2011 Unipac)

49. Care of the Imminently Dying • Conclusion • Best practice in palliative care includes the following • Recognize when dying is soon • Recognize when active dying has begun • Assess and review the plan of care for the imminently dying • Assess and review the plan of care for the actively dying • Manage problems associated with active dying • Engage in high-quality communication with caregivers, focused on informing, supporting, and planning (AAHPM 2011 Unipac)