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20 Improvements in End of Life Care

Changes Internists Could Do Next Week!

Don Berwick, MD, Institute for HealthCare Improvement, at the ACP-ASIM Annual Meeting, April 22, 1999

  1. Ask yourself as you see patients, "Would I be surprised if this patient died in the next few months?" For those "sick enough to die," prioritize the patient's concerns - often symptom relief, family support, continuity, advance planning, or spirituality.
  2. To eliminate anxiety and fear, chronically ill patients must understand what is likely to happen. When you see a patient who is "sick enough to die" - tell the patient, and start counseling and planning around that possibility.
  3. To understand your patients, ask (1) "What do you hope for, as you live with this condition," (2) "What do you fear?," (3) It is usually hard to know when death is close. If you were to die soon, what would be left undone in your life?," and (4) "How are things going for you and your family?" Document and arrange care to meet each patient's priorities.
  4. Comprehensive and coordinated care often breaks down when providers don't have all the facts and plans. The next time you transfer a patient or a colleague covers for you, ask for feedback on how patient information could be more useful or more readily available next time.
  5. Unsure how to ask a patient about advance directives? Try: "If sometime you can't speak for yourself, who should speak for you about health care matters?" Follow with: 1) "Does this person know about this responsibility?" 2) "Does he or she know what you want?" 3) "What would you want?," and 4) "Have you written this down?"
  6. To identify opportunities to share information with patients and caregivers, ask each patient who is "sick enough to die:" "Tell me what you know about ________(their disease)." Then: "Tell me what you know about what other people go through with this disease."
  7. Most internists' practices have educational handouts on heart failure, COPD, cancer and other fatal chronic illnesses to give to patients. Read them - if your handouts do not mention prognosis, symptoms, and death, exchange them for ones that do. Perhaps make The Handbook for Mortals and other resources available to your patients.
  8. Some patients and their families are getting most of their information from the Internet. Log onto a patient-centered internet site about an eventually fatal chronic illness to learn what is of interest to patients and families.
  9. Is coordinating the care of your chronically ill patients taking up too much of your time? Call a local advocacy group (American Heart Assoc., American Cancer Society, etc.) for help, or consult with a care management service.
  10. Discussing and recording advance directives with all your patients may take a while. How many patients over the age of 85 do you have? Start making plans with them. Expand to all who "are sick enough to die."
  11. Use each episode in the ICU or ER as a "rehearsal." Ask the patient what should happen the next time. Be sure the patient has all necessary drugs at home and knows how to use them. Can you promise prompt relief from dyspnea near death? Tell the patient and family what's possible, and make plans together.
  12. Ask your next patient who is "sick enough to die" whether anything happened recently regarding their medical situation for which they were unprepared. Work to anticipate the expectable complications and to have plans in place.
  13. Since meperidine (Demerol) is almost the only opioid which has toxic metabolites and thus is contraindicated for chronic pain, banish meperidine from your prescribing and from the formularies where you work.
  14. Very sick people will often be most comfortable at home or in nursing homes. Identify programs that are good at home care, send patients to those quality services, and work with them to fill the gaps your patients encounter.
  15. Feedback on performance guides improvement. Find the routine surveys, administrative data, and electronic records that record symptoms, location of death, unplanned hospital or ER use, family satisfaction after the death, and other outcomes. Set up routines to get feedback on performance and improvement every month.
  16. Except in hospice, most families never hear from their internist after a death. Change that! Make a follow-up phone call or set a visit to console, answer questions, support family caregivers, and affirm the value of the life just recently ended. At least, send a card!
  17. Working with very sick patients who die is hard on caregivers. Next week - and every week - praise a professional or family caregiver who is doing a good job.
  18. We can't really change the routine care without changing Medicare. Contact your Congressional representatives to ask for hearings, demonstration programs, research, and innovation to improve the Medicare program.
  19. Some of our language really does not serve us well. Never say "There's nothing more to be done," or "Do you want everything done." Talk instead about the life yet to be lived, and what CAN be done to make it better (or worse).
  20. Patients and families need to be able to rely upon their care system. Consider what you can PROMISE on behalf of your care system - pain relief, family support, honest prognosis, enduring commitment in all settings over time, planning for complications and death, and so on. Pick a promise that your patients need to hear and start working with others to make it possible to make that promise! Quality improvement strategies work!