Palliative Care. Past, Present & Future

Transcription

1 Palliative Care Past, Present & Future Andrew E. Esch, MD MBA Medical Director Palliative Care and Q-Life Lee Memorial Hospital System Body, Mind, Spirit Conference October 14, 2011

2 Objectives Learn from the current published evidence and research: Where we came from Where we are now in Palliative Care Where we are going, or should be going Be enthusiastic

3 Life is pleasant. Death is peaceful. It's the transition that's troublesome. Isaac Asimov US science fiction novelist & scholar ( )

4 Past

5 Historical Perspective 1965 First hospice founded in London, the original palliative care program 1974 First hospice established in the US New Haven, CT 1982 Medicare Hospice Benefit established 1990 s -- First hospital-based palliative care program established 5

6 Life and Death In America Over 2 million deaths per year in the USA Projected life expectancy at birth (2010) is 78.3 years U.S. National Center for Health Statistics, National Vital Statistics Reports (NVSR), Deaths: Final Data for 2006, Vol. 57, No. 14, April 17, 2009.

7

8 Leading Causes of Death USA Diseases of the Heart 1. Diseases of the Heart 1. Heart Disease 2. Cancer and Other Tumors 2. Malignant Neoplasms 2) Cancer 3. Intracranial lesions of vascular origin 3. Cerebrovascular 3) Stroke diseases Source: Centers for Disease Control and Prevention

9

10 I stay out of hospitals, people die there..

11 WHERE Do We Die? 53% 24%

12 WHERE Do We Want to Be? How Do Americans Want to Die? A Factorial Vignette Survey of Public Attitudes about Endof-Life Medical Decision-Making Charles E. DenkaJohn M. BensonbJohn C. FletchercTina M. Reigeld Social Science Research Volume 26, Issue 1 March 1997, Pages Program on Public Opinion and Health Care, Harvard School of Public Health

13 Where Do We Want to Be? 65%

14 What Do Patients with Serious Illness Want? Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones Singer et al. JAMA 1999;281(2):

15 And What They Have Gotten: Suffering in U.S. Hospitals 42% of terminally ill hospitalized patients have more than three significant procedures in an attempt to prolong their lives 50% of terminally ill hospital patients spend time in the Intensive Care Unit before their death 50% of terminally ill patients have serious pain in the last 3 days of life SUPPORT JAMA 1995;274:

16 Family Satisfaction with Hospitals as the Last Place of Care Not enough contact with MD: 78% Not enough emotional support (pt): 51% Not enough information about what to expect with the dying process: 50% Not enough emotional support (family): 38% Not enough help with pain/sob: 19% Teno et al. JAMA 2004;291:88-93.

17

18 The Grim Reality

19 Present

20 Focus is on Quality of Life And in the end it's not the years in your life that count. It's the life in your years Abraham Lincoln

21 Palliative Care A good death?

22 A Good Death? Death is always going to be filled with suffering, loss and grief Goals are not good deaths Goal is to relieve the pain and suffering for our patients and their families Avoid bad deaths

23 Avoid BAD Deaths

24 National Data Hospital Data Public Opinion Research

25 Key Findings in AHA Annual Survey AHA annual survey March 2011 Hospitals across the country that have PC programs: Increase of 138.3% since 2000 Source: National Palliative Care Research Center (NPCRC). Hospital data used for the analysis was the American Hospital Association (AHA) Annual Survey Database for fiscal years 2000 through

26 Key Findings in AHA Annual Survey Large hospitals (>300 beds) 85% Mid-size hospitals ( beds) 54% Small hospitals (<50 beds) 22%.

27 Hospitals With Palliative Care Programs Sources: FY AHA Annual Survey Databases. Chicago, IL: Health Forum, an American Hospital Association affiliate, National Palliative Care RegistryTM: Center to Advance Palliative Care (CAPC), as of March 17,

28 Public Opinion Research The objectives of this research were to: Explore key audiences awareness and understanding of palliative care Test language, terminology, definitions and messaging to be used in discussing palliative care with consumer audiences. 28

29 Public Opinion Research Conducted by Public Opinion Strategies a Washington-based public opinion polling organization Commissioned by the Center to Advance Palliative Care (CAPC) With support from the American Cancer Society (ACS) and The American Cancer Society Cancer Action Network (ACS CAN)

30 Consumer Awareness About Palliative Care 30

31 Patient Concerns Biggest/ One of Biggest Concerns % Doctors might not provide all of the treatment options or choices available 58% Doctors might not talk and share information with each other 55% Doctors might not choose the best treatment option for a seriously ill patient s medical condition 54% Patients with serious illness and their families leave a 51% doctor s office or hospital feeling unsure about what they are supposed to do when they get home Patients with serious illness and their families do not have enough control over their treatment options 51% Doctors do not spend enough time talking with and listening to patients and their families 50% 31

32 Key Takeaways From Research Barriers include: The lack of awareness that palliative care services exist The term palliative care having little or no meaning to consumers Many inside the industry framing it as end of life care Physician attitudes about palliative care 32

33 The Response

34 New Definition of Palliative Care CAPC Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. 34

35 New Definition of Palliative Care CAPC The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

36 Language Makes a Difference Palliative care is about improving quality of life, providing an extra layer of support, and having a team focus to patient care. Palliative care is about helping both the family as well as the patient with serious illness. 36

37 Language Makes a Difference This research indicates that palliative care must be differentiated from hospice or end of life care. Focus group respondents became confused about the meaning of palliative care when the terms hospice or end of life were introduced into the definition of palliative care. It is important to avoid defining palliative care by what it is NOT.

38 Language Makes a Difference Once consumers understand what palliative care is, they have an extremely positive feeling about this type of care. Serious Illness vs. Advance Illness: Palliative care should be positioned as care for patients with serious illness not advanced illness. Advanced illness is perceived to be more closely aligned with terminal illness.

39 What Patients Today Want 1. Palliation of symptoms 2. Communication about illness and death Psychosocial support 3.

40 Palliation of Symptoms For Eric, the unknown was his biggest fear, next to his constant pain. You calmed his fears and relived his pain.

41 Eric s List Eric s goals of care: Be free from pain Die at home Spend as much time out of chair as possible Eat as much as I can See my nephew Get outside one last time Spend time with my family

42 Palliative Care 1. Palliation of symptoms 2.Communication and death 3. Psychosocial about illness support

43 You can hear a lot by listening

44 Communication About Illness and Death Listen Elicit values and goals Offer prognosis Discuss death while offering hope

45 Richard I never knew he was that sick

46 Listen! How Long do we wait before we interrupt our patients? Two Words to Improve Physician-Patient Communication: What Else? Mayo Clin Proc. 2003;78: Mayo Foundation for Medical Education and Research

47 13 SECONDS!

48 Eliciting Goals and Values

49 Prognosis Prediction is hard, especially about the future

50 Hope Please make sure that Chloe and Zach remember me.

51 Palliative Care 1. Palliation of symptoms 2. Communication about illness and death Psychosocial support 3.

52 Psychosocial Support Nonabandonment Angst Spirituality

53 Nonabandonment

54 Angst Existential angst at end of life is the fear that our life did not matter. Completing tasks Closure to our lives

55 Dying Well Dying Well: The Prospect for Growth at the End of Life Ira Byock, MD Please forgive me" "I forgive you" "Thank you "I love you. Goodbye

56 Death Ends a Life Not a Relationship

57 Spirituality

58 Future

59 The Future 1. Remember where you came from 2. Know where you are now 3. Figure out where you want to be

60 Where You Came From

61 Where We Are Now CAPC REPORT CARD We are a B We used to be a C Over 4000 inpatient consults in Lee County Hope, Tidewell, Avow and Vitas Hospices Some home based palliative care programs Some nursing home based palliative care programs Some palliative care outpatient services

62 Where We Want To Be The Care Continuum 62

63 Defining Continuum From All patient s perspective: the places & providers that assist with their journey and the gaps between them

64 Keeping the Patient Centered What do patients want? Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones 64

65 Where We Want To Be

66 Conclusion Death is part of life People have distressing symptoms at the end of life Treat them!! Be Courageous!! Discuss serious illness, prognosis, and even death AVOID BAD DEATHS Practicing Palliative Medicine can be a gift We have more to offer patients than just our treatments Be Enthusiastic!!!

67 Quiz #1 Charles Schulz 1. Name the five wealthiest people in the world 2. Name the last five Heisman trophy winners 3. Name the last five winners of the Miss America contest 4. Name five people who have won the Nobel or Pulitzer prize 5. Name the last five academy award winners for best actor and best actress 6. Name the last decades list of world series winners

68 Quiz #1 How did you do? The point is, none of us remember the headliners of yesterday these are no second-rate achievers they are the best in their fields. But the applause dies. Awards tarnish. Achievements are forgotten.

69 Quiz # List a few teachers who helped you through school Name three friends who have helped you through difficult times Name five people who have taught you something worthwhile Think of a few people who have made you feel appreciated and special Think of five people you enjoy spending time with Name half a dozen heroes whose stories have inspired you

70 Quiz#2 Easier? The lesson? "The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care."

71 References Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson Mitch Albom, Random House Books 1997 The Four Things That Matter Most: A Book About Living, Ira Byock, M.D. FREE PRESS A division of Simon & Schuster March 2004 Dying Well: The Prospect for Growth at the End of Life, Ira Byock, MD, Berkeley publishing 1997 The Influence of the Probability of Survival on Patients' Preferences Regarding Cardiopulmonary Resuscitation NEJM Volume 330: February 24, 1994 Number 8 Update In Palliative Medicine, Annals of Internal Medicine,15 January 2008, Volume 148 Number 2 The SUPPORT Study: A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) by The SUPPORT Principal Investigators,, The Journal of the American Medical Association (November 22/29, 1995) End of Life Care Audio Digest 2006, Steven Pantilat, MD University of California at San Francisco