As a family doctor, I had the privilege of sitting down at the hospital recently with Mr. M, a longstanding patient of mine, and his family. Mr. M is a college-educated engineer, struggling near the end of his life with end-stage kidney disease, dialysis, severe congestive heart failure and crippling COPD. And he was pretty down about it.
In the hospital, a critical care physician, a pulmonologist, a nephrologist, and a cardiologist were caring for Mr. M. Recently his heart stopped and was restarted while he was in intensive care. He and his family then decided that if that happens again, he would like to be left alone with no resuscitation or artificial life support. That’s when Mr. M’s daughter, a registered nurse, asked me to come up to the ICU to talk with them about end-of-life issues. I no longer make rounds at the hospital, so I called ahead to let his ICU nurse and his medical staff know I was coming. I drove up after my office hours, so we could spend some uninterrupted time together. Mr. M is still sharp as a tack and was visibly shaken by his brush with death and exhausted by his frequent coughing and inability to easily clear phlegm from his lungs. We sat together in his room with the curtain drawn for privacy, his wife, his two daughters and one son-in-law by his side.
My goals for the meeting were to be sure that Mr. M was able to make his goals of care clear to everyone; to spell out to Mr. M and his family in simple terms the difference between palliative care and hospice care; and to make recommendations to the hospitalist team that would support his goals of care and return to him a sense of control over his own life.
We had a wonderful meeting together. It took time and some quiet moments for everyone to get comfortable. I explained to Mr. M and his family that palliative care is medical care provided by physicians, nurses and all health professionals at every level that specializes in the relief of the pain, symptoms and stress of serious illness. Treatment doesn’t stop, but the goals of treatment may change, even expand, to seek a better quality of life in the present rather than push for a longer life. Hospice is a philosophy of care, treating the person rather than the disease and focusing on comfort, compassion, and quality of life. Accepting hospice means acknowledging a terminal illness and that getting better, maintaining a level of wellness, or achieving a cure is not possible. Life-sustaining treatments and treatments to prolong life stop. For Medicare, hospice care requires certifying that a patient has six months or less of life remaining.
Mr. M clearly expressed that he is not ready to accept hospice care but would welcome palliative care. In his case, that meant going to a skilled nursing facility, not home to die, to try to regain his previous level of strength. Everyone understood that he could choose at any time to change to hospice care.
The sigh of relief in the room was palpable. We then identified some specific care elements that he would like. That’s when the conversation lightened and we had some laughs! His son-in-law jumped right in and said, “He needs four things: sports on TV, a beer, crossword puzzles and good food!” Mr. M is a sports enthusiast. When he can’t sleep, he watches ESPN or whatever cable sports network he can find. He also loves to have a beer and has disciplined himself to enjoy only one a day because of his kidney disease and fluid restriction. And he said he couldn’t stand the hospital food!
Now we were getting somewhere. I recommended to the hospital staff that Mr. M be permitted to watch sports on his TV or laptop at any time; that family be permitted to bring one beer into the hospital each day and home cooked meals based on the dietary restrictions that they already understood; that Mr. M begin a low-dose antidepressant; and that he and his family receive a palliative care consultation.
My meeting with Mr. M and his family was the best experience I’ve had in a long time, and his family enthusiastically expressed their gratitude. We talked medicine and reviewed his severe clinical conditions and limitations. But we also acknowledged the vital importance of life, living and the sense of control that is so important to us all. We acknowledged and respected Mr. M’s and his family’s needs and defined a care path that would reflect them.
Visiting with Mr. M, I remembered how much I miss making hospital rounds. But the current demands of delivering comprehensive, coordinated, timely and quality care in a doctor’s office have rendered it nearly impossible for a family physician to do both jobs and do them well. Our challenge as a medical profession is to ensure communication and cooperation with the hospital clinicians who do not know our patients but who care for them when they’re hospitalized–– patients we know well, with whom we have shared experiences and built trusting relationships like the one I have with Mr. M.
I was able to help Mr. M and his family make these major decisions because his daughter called me, but all health care providers ought to be informed and involved in such matters. All of a patient’s caregivers should have access to the patient’s current health status. As our health care system evolves into silos of care with hospitalists for hospitalized patients and primary care doctors for outpatients, we must take care not to fragment and depersonalize the care we give. We must work hard to achieve the best of both worlds: high quality and high value care in every setting.
As for Mr. M, he stabilized and was discharged to the nursing home two days later where he continues to work for improvement and recovery.
H. Andrew Selinger is a family physician who blogs at Primary Care Progress.
