Palliative and End of Life Care Extended Workshop: CSIM 2014 Calgary Karen Tang, MD FRCPC General Internal Medicine University of Calgary
Drs. Brisebois, Hiebert, and I have no affiliation with pharmaceutical, medical device, or communications organizations. We have no conflicts of interest.
1. Prognosticate in non-cancer patients 2. Identify how to effectively approach goals of care discussions early 3. Aid the patient in transitioning to a palliative care approach
Example 1: BODE index for COPD N Engl J Med. 2004 Mar 4;350(10):1005-12 http://reference.medscape.com/calculator/bode-index-copd
Example 2: Seattle Heart Failure Model Circulation. 2006 Mar 21;113(11):1424-33 http://depts.washington.edu/shfm/index.php
Victoria Hospice Society. Medical Care of the Dying, 4 th ed; 2006, p 121 J Palliat Med. 2005 Jun;8(3):503-9 J Palliat Med. 2007 Feb;10(1):111-7
J Pain Symptom Manage. 2009 Jul;38(1):134-44
eprognosis.org
JAMA. 2001 Jun 20;285(23):2987-94 eprognosis.org
Tool not generalizable to your patient Derived statistically at a population level Ability to predict individual survival is limited Factors to be inputted into tool not available Prognostic information varies in format and may be difficult to apply in context Does not incorporate patient values J Palliat Med. 2008 Jan-Feb;11(1):84-103 Thorax. 2012 Sep;67(9):777-80
1. Unpredictable and Uncertain Trajectory Circulation. 2012 Apr 17;125(15):1928-52 Palliat Med. 2009 Oct;23(7):642-8 Br J Gen Pract. 2011 Jan;61(582):e49-62
2. Lack of patient understanding That disease is life-limiting In pulmonary rehab all of us found out for the first time that we were not going to cure or reverse emphysema. I know how I reacted, and I heard some people gasping. That was the first time we all knew that we could not reverse this disease. Actual diagnosis is not given You ve got some damage to your lungs, probably from your work or perhaps your smoking Palliat Med. 2009 Oct;23(7):642-8 Thorax. 2012 Sep;67(9):777-80 Chest. 2002 Jul;122(1):356-62
JAMA. 2008 Jun 4;299(21):2533-42.
Helps patients make decisions Medical treatment Advance care planning Putting affairs in order Really the purpose of our offering a prognosis to a patient is to help them live their life the way they want to live it. An opportunity for patients to have discussions with family about end of life values and wishes Enhances patient s feeling of control Palliat Med. 2009 Jan;23(1):29-39 J Pain Symptom Manage. 2010 Mar;39(3):527-34
Though all patients want honesty, 91% also wanted hope Hope takes many different forms Cure Living longer than expected Making it to a certain event or goal Finding meaning in life Symptom control Having support, healing in relationships Peaceful death Palliat Med. 2009 Jan;23(1):29-39 Psychooncology. 2008 Jul;17(7):641-59 Can J Cardiol. 2007 Aug;23(10):791-6 J Clin Oncol. 2005 Feb 20;23(6):1278-88
Allow for some ambiguity Being detailed and unequivocal Hiding or distorting the truth Health professional uneasiness All endanger hope Emphasize what can be done Symptom control Support, care, dignity Explore realistic goals Palliat Med. 2009 Jan;23(1):29-39 Psychooncology. 2008 Jul;17(7):641-59 J Clin Oncol. 2005 Feb 20;23(6):1278-88
1. Prognosticate in non-cancer patients 2. Identify how to effectively approach goals of care discussions early 3. Aid the patient in transitioning to a palliative care approach
1. Surprise Question or 2. Elderly Age >80 years hospitalized for medical or surgical condition or 3. Age >55 years with 1 or more severe chronic condition CMAJ. 2014 Apr 1;186(6):425-32 J Palliat Med. 2001 Summer;4(2):249-54
Chronic Condition COPD CHF Cirrhosis Cancer Dementia Marker of Severe Disease pco2 >45 mm Hg Cor pulmonale Respiratory failure in preceding year FEV1 <0.5L NYHA class IV LV EF <25% Encephalopathy Child Pugh C Child Pugh B with GI bleed Metastases or Stage IV Inability to perform ADL s or bedbound Minimal verbal output CMAJ. 2014 Apr 1;186(6):425-32
Other suggested triggers : Diagnosis of a chronic or incurable disease Change in functional status Talking about wanting to die...comprises most internal medicine patients! Hospitalization is a good opportunity Relevance (change in trajectory) SDM s often present BMJ. 2010 Sep 16;341:c4862 CMAJ. 2014 Apr 1;186(6):425-32 JAMA. 2000 Nov 15;284(19):2502-7
Physician reluctance to initiate discussions is a significant barrier Patients prefer a trusted provider However, most are willing to respond and have these conversations with physicians, if asked Majority of patients feel that physicians should initiate the discussion BMJ Support Palliat Care. 2013 Nov 19 Palliat Med. 2006 Jun;20(4):397-406
If you were to get really sick is there anyone you trust to make decisions for you, and have you talked with this person about what s important to you? Can we talk about this today? Do you have a living will or advance directive or know what these terms mean? If not ready, try to motivate, but be sensitive and understand that discussions are dynamic Ann Intern Med. 2010 Aug 17;153(4):256-61 CMAJ. 2014 Apr 1;186(6):425-32
Quiet, private place (if possible) Ensure communication aids optimized Who will be there? Ask patient who they want there May want to include a team member Ask the patient first The person leading the discussion should not be the most junior member of the team! Med J Aust. 2007 Jun 18;186(12 Suppl):S77, S79, S83-108 CMAJ. 2014 Apr 1;186(6):425-32 J Pain Symptom Manage. 2007 Jul;34(1):81-93
Examples: What do you understand about your disease? I am concerned about your overall health. Tell me how the past year has been going. Has anyone spoken to you in the past about what to expect from your disease and the kinds of treatments you would not want when you get really sick? CMAJ. 2014 Apr 1;186(6):425-32
Allows a common starting place (information exchange) Death usually not referenced initially Illness and treatment challenges often disclosed But, the possibility of dying is often brought up when physicians explore patient understanding BMJ. 1998 Jan 10;316(7125):130-2 Palliat Med. 2006 Jun;20(4):397-406
Goals: Examples Given the severity of your illness, what is most important for you to achieve? What are your most important hopes? What are your biggest fears? What do you worry about the most? JAMA. 2000 Nov 15;284(19):2502-7
When you think about the future, what are the things you want to avoid? JAMA. 2000 Nov 15;284(19):2502-7 CMAJ. 2014 Apr 1;186(6):425-32 Circulation. 2012 Apr 17;125(15):1928-52 Values: Examples Did this situation make you think about states of being that would be so unacceptable to you that you would consider them to be worse than death? Have you seen or been with someone who has had a particularly good death? What about a difficult death?
1. Who will be SDM? If with future progression of your illness you are not able to speak for yourself, who would be best able to represent your views and values? 2. How much leeway is there in substitute decision making? JAMA. 2000 Nov 15;284(19):2502-7 CMAJ. 2014 Apr 1;186(6):425-32 Circulation. 2012 Apr 17;125(15):1928-52
Are there certain decisions about your health that you would never want your loved one(s) to change under any circumstances? CMAJ. 2014 Apr 1;186(6):425-32 Ann Intern Med. 2010 Aug 17;153(4):256-61 What if, based on changes in your health, the doctors recommend something different from what you have told your loved ones? Will you give your loved one(s) permission to work with your doctors to make the best decision possible for you, even if it may differ from what you said in the past?
Avoid: A menu of choices What would you like us to do? Focusing on life-sustaining interventions Mastering Communication with Seriously Ill Patients 2009, pp121-130 CMAJ. 2014 Apr 1;186(6):425-32
Based on what you ve said, I think the most reasonable course of action is Though it is up to you to decide, many people in your circumstances would consider it acceptable to I recommend that we do the following CMAJ. 2014 Apr 1;186(6):425-32
1. Identify patients for these discussions 2. Assess readiness 3. Optimize physical and social setting 4. Initiate the conversation 5. Assess patient perception and understanding, with information exchange 6. Assess patient goals and values 7. Determine SDM and leeway in substitute decision making 8. Make a value-based recommendation
1. Prognosticate in non-cancer patients 2. Identify how to effectively approach goals of care discussions early 3. Aid the patient in transitioning to a palliative care approach
An approach that improves quality of life of patients and their families facing the problem associated with life threatening illness through the prevention and relief of suffering Applicable early in course of illness, in conjunction with other therapies that are intended to prolong life http://www.who.int/cancer/palliative/definition/en/
Palliative Care Models http://www.chausa.org
Palliative Care Models: Even Newer J Pain Symptom Manage. 2014 Jan;47(1):e2-5
Improves: Quality of life, well-being and dignity Satisfaction with care Respect for treatment preferences and wishes Access to hospice & home care services Fewer/ Less: Depressive symptoms Aggressive end of life measures Health care costs Hospitalizations Palliat Med. 2014 Sep;28(8):1000-1025 N Engl J Med. 2010 Aug 19;363(8):733-42 J Am Geriatr Soc. 2008 Apr;56(4):593-9 J Support Oncol. 2011 May-Jun;9(3):87-94 JAMA. 2008 Apr 9;299(14):1698-709 Gynecol Oncol. 2013 Sep;130(3):426-30
JAMA Intern Med. 2013 Feb 25;173(4):283-90
1. Prognosticate in non-cancer patients 2. Identify how to effectively approach goals of care discussions early 3. Aid the patient in transitioning to a palliative care approach
There are many prognosticating tools- these facilitate discussion of patient understanding and wishes but are not the focus of GOC discussions GOC discussions ensure that we provide care consistent with patient values Integrate advance care planning and palliative care early, simultaneously with acute medical therapy