Palliative Care: Not Just End of Life Issues

Mindy Hoffman, NP-C Cecilia May, MD SERH Palliative Care Team September 8, 2010

Orthopedics vs. Anesthesia Palliative Care vs. Oncology

Atul Gawande, MD, 8/2/10, The New Yorker, Letting Go: What should medicine do when it can’t save your life?

All-out treatment, we tell the terminally ill, is a train you can get off at any time – just say when. But for most patients and their families this is asking too much… …our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come…

DNR Discussion: Case

 Mrs. B. is a 53 yo wf with Stage IV Breast CA mets to bone and liver admitted with leg swelling found to be caused by DVT. She has no ACP documents and you, the MD, are called to discuss code status.

DNR Discussion Scenario 1

     MD: Mrs B, according to hospital rules, I need to discuss your code status with you. Do you wish to be a full code or a no code?

Mrs B: Ohhh, I don’t know…I’ve never thought about this before…I don’t want to die. I still have relatively young children.

MD: So you want to be a full code?

Mrs B: Yes, I guess so… MD: Ok. (MD leaves the room)

DNR Discussion: Scenario 2

      MD: So, Mrs B. You have Stage IV cancer and now you have DVT. This is not a good situation. What do you want to do about resuscitation? Do you want us to do everything?

Mrs B: Well, I think so. I still have young children and I want to live.

MD: You mean, you want us to jump up and down on your chest, break ribs, and put a tube down your throat only to end up dying in the ICU on the vent and not even able to talk to your family??

Mrs B: Well, no, not like that… MD: OK, so you want DNR status.

Mrs B: Well, I guess so…

Debriefing

        What worked? What didn’t?

Players Permission Demeanor Jargon Delivery Empathy Patient comfort

Stratify your patient

   Healthy—discuss advance directives, resuscitation is designed for this group with 20 – 40% success rate if reversible condition Acute/Chronic Illness—Resuscitation may lead to poor outcome, need to discuss DNR, goals, meaning of QOL in order to advise the patient Imminently dying—Death is not preventable and resuscitation is not helpful, it is your duty to advise your patient of this fact

Subtleties of ACP

    Know how to start the conversations Ask about goals of care--What does living well mean to you?

Make Physician Recommendations—do not expect the patient to know the best choice for his situation Ask probing questions—What does “do everything” mean to you? Do you know what that would involve? Do you know the likely outcome? What outcomes would be unacceptable to you?

Language Issues

   The words we use are important and can have unintended consequences Trying to frame things in a positive light helps patient and family focus on the patient’s actual goals of care Example: “It’s time to think about being less aggressive with his care” vs “We will renew our efforts to treat his symptoms; his comfort and dignity are our utmost priority”

Method of Communication

   Prepare for discussion with patient and family. Understand the condition, prognosis, review and ACP documents, know who is the family spokesperson or “agent” Prepare the environment. Sit facing the patient, eliminate distractions, have tissues Determine what the patient knows and how much he wants to know.

Method, continued

 Explore prior experiences, goals of care, expectations and hopes  Suggest REALISTIC goals  Ask permission to discuss details not yet shared e.g. prognosis  Speak in general terms when discussing prognosis  Respond empathetically

Method, continued

     Consider writing key elements of the discussion and leaving with the patient for review Give handouts or reference material for the patient/family to review at a later time Review the discussion to assess what they have heard Agree on an action plan and follow up time Reassure patient and family we will continue CARE (not “just comfort care”) despite any treatment not chosen

Communication Training

 Becoming part of medical school and subspeciality curricula  Data clear that skills can be acquired and are not assumed to be inherited  With practice and repetition, communicating bad news and having the hard discussions need not be so painful (for us, that is)

Helpful phrases

 Relaying bad news: “warning shot” – I wish I had better news for you today – Please bear with me, it is difficult to tell you this – I wish things were different, but the test results are not good – I know this is very upsetting – This must seem unreal to you – I know you must be feeling overwhelmed – I want to be honest with you, but I wish your disease was responding better to treatment

Helpful phrases

 Advance Care Planning – What do you understand about your health situation?

– I would like to talk to you about possible health care decisions for the future. This will make it easier for me to care for you and make certain that we are following your goals and wishes – If you were unable to make these decisions, who would you trust to make them for you?

– Have you discussed these issues with your family? Could I help you have that discussion?

Helpful phrases

 Determining decision making capacity – Will you describe your current condition? What have the doctors told you?

– Tell me the options for treating X as you understand them – Explain to me which option you feel is best and why – Some people when they are ill want to pursue very aggressive things to prolong life, others may want to focus on comfort as the priority. Which type are you?

Helpful phrases

 Quality of life—understanding the impact of the disease – How has your disease interfered with your daily activities? Your family/friends?

– What symptoms bother you the most?

– What concerns you the most as X progresses?

– Do you feel worried or sad about your illness?

– Many patient wonder about the meaning of all this— do you?

– What religious beliefs do you have? Do you draw on them for strength?

Helpful phrases

 Prognosis – Tell me how you spend your day; are you lying down or resting > 50% – Has anyone talked to you about what to expect?

– Do have a sense of how much time is left? Is that something you want to talk about?

– Based on what I see and what you have told me, I believe that you are dying

Helpful phrases

 Prognosis – Although I can’t give you an exact time, in general, patients with your condition life ___ wks/months to ___ wks/months – It could be longer and we will do everything possible to make sure – Unfortunately, it could also be shorter, so we should hope for the best, but be prepared for the worst

Appropriate PC Referrals

     New diagnosis of life limiting illness Help with complex decision-making and determining goals of care Unacceptable level of pain or other symptom for > 24 hours Complex psychosocial or spiritual needs Frequent ER visits for same chronic illnesses

Appropriate PC Referrals

 Frequent readmissions for same Dx  LOS > 5 days without progress  ICU patients with poor prognosis or lack or progress  Transition to end-of-life comfort care  Patient or family support for difficult diagnoses with many physicians involved in care

References

    EPERC modules and fast facts. http://www.eperc.mcw.edu/ffindex.htm

Respecting Choices: Advance Care Planning. Gundersen Lutheran Medical Foundation. www.respectingchoices.org

Letting Go - What should medicine do when it can't save your life? Atul Gawande, MD, The New Yorker 8/2/10 Communicating with Seriously Ill Patients: Better Words to Say, S. Pantilat, JAMA. 2009: 301(12) 1279-1281

References

     Titrating Guidance. Arch Internal Med. 2008. 168 (16) 1733-1739 Good Communication. J Pall. Med. 2007. 10 (4) 956-957 Bringing Hope and Healing to Grievingt Patients with Cancer JAOA. 2007. Supp. 7. Vol (107)12 What Should We Say When Discussing Life Support and Code Status with a Patient? J Pall. Med. 2010 13 (2) 185-194 Communication Practices in Physician Decision-Making for an Unstable Critically Ill Patient with End-Stage Cancer. J Pall.Med. 2010. 13 (8) 1-8