Abstract
Family: Gerry, Mary's boyfriend, companion, partner. He and Mary have been together for more years then anyone can remember. He says one of the social workers said he is a significant other, as if that phrase is sufficient to capture who these people are to each other. Because they live together and have been together for so many years, the law says he is Mary's domestic partner. That makes him the decision maker now that Mary is unable to direct her own care because of advanced dementia. Gerry says there is a family, decisions are family decisions, and Grace, Mary's oldest child, is the person who will sign consents. In fact, it is her signature on the DNR that was done a few days ago.
Mary's other children live in different parts of the country. Grace speaks to them regularly and they know what is happening to their mother. The decline began ten months ago when Gerry could no longer take care of her. She had many years of failing memory but then matters of feeding, bathing, toileting became too much for this healthy and hardy man in his late 70s. It was no longer safe for Mary to be left alone, which meant she could no longer live at home.
Mary moved to assisted living and Gerry visited daily. Then the infections, a urinary tract infection (UTI), and pneumonia began and she was hospitalized. Mary became debilitated and she had to be discharged from the hospital to a nursing home for rehabilitation. There was very little rehabilitation. Mary was quickly becoming a custodial patient, although the family continued saying she was in the nursing home for rehabilitation.
For Grace's daughter Jena, her grandmother is the woman who smiled at her and kissed her cheek only three weeks ago. There are no more smiles, no more kisses, but Jena has no doubt that they will come again when grandmother gets better, when the antibiotics take hold and the infections go away.
The medical resident consults with the hospital ethicist. The family is asking for more to be done, and what is being done doesn't make sense. This is futility of care. Nothing will change the outcome. We need to meet with the family. The resident, who is always in touch with the daughter, says she works and comes in the evenings. She needs to come during the day when the people she needs to speak to are in the hospital. The resident is hesitant. It is hard for him to use authority this way. The ethicist suggests that rather then asking the daughter to come to the hospital for a meeting, he needs to tell her the doctors need to meet with her in the morning to discuss her mother's care.
It is 11 a.m. and we begin. The ethicist frames the meeting.
“The doctors ask me to join them in family meetings when the patient has complicated medical problems and families need to make difficult decisions about what should be done. Our purpose in this meeting is to determine the goals of care based on prognosis, that is, what we expect the outcome to be, and your knowledge of Mary, and what she might want or not want us to do if she were able to be with us and hear what the doctors are here to say.”
Grace begins. She describes the slow decline and multiple hospitalizations in these past few months. The doctor speaks about comorbidities: diabetes, chronic obstructive pulmonary disease (COPD), and congestive heart failure (CHF). Her mother hasn't had much appetite recently and in fact has not eaten at all during the last few weeks. “She can't swallow and once, when she did, the food went into her lungs and she developed pneumonia.” The doctor explains that not being able to safely swallow, and not having appetite, is part of the progression of the dementia.
And then the doctor stops. He doesn't say what needs to be said. The ethicist says it for him. Maybe it is easier for him since he is neither a physician nor responsible for the patient's care. “From what you are telling us, the advanced dementia, the multiple admissions with both lung and heart problems, and now the failing kidneys, it suggests that there is nothing more that we can do, nothing that we can offer, to make her better. She is in the last part of her life. This is the terminal part of the illness. We don't know if it is weeks or even months. But we are moving towards the end. The doctor speaks about choices in goals of care: cure versus comfort, the number of days or the quality of days.
And then there is silence.
“This is not the news you wanted to hear,” says the ethicist.
“We can't just give up,” Grace answers. “There are always things to do. We are religious people. We always have hope. We can't just let her die.”
“Grandma spoke to me just a few weeks ago. It can't be that bad,” adds Jena.
“We need to do what's right,” says Gerry, the person in the room who knows our patient best.
“That's why we are here,” says the ethicist. “We all want what's best. What we are struggling with is what that should be. What is best for Mary and also what makes sense for you. The doctor says that Mary will be leaving us no matter what we do. You are not so sure that he is right.”
“She only has pneumonia and you are treating her for it,” says Grace.
“If it was just pneumonia, we would not be talking this way,” answers the doctor. “You mother has had diabetes for years, her heart and lungs are weak and now the kidneys are failing. We die from heart and lung disease and the disease is advanced. Mary is now terminal. The frequency of admissions during these past few months tells us that. Even if we are able to cure the pneumonia, and you know how difficult that has been, there is nothing we can do about the underlying disease.”
“I have hope. I can't give up hope.”
“Hope is what keeps us going when we have to face such a profound loss,” says the ethicist. “You will be living with the decisions we make about the goals of care and what should or should not be done, or what should be stopped. These are decisions that you will live with long after your mother has passed away. That needs to be as much a part of your decision as much as anything else.”
The decision: The family hadn't thought of decisions about what to do until the doctors spoke a few days ago about a DNR. That seemed to make sense. If Mary's heart stopped, if she stopped breathing, if she was in fact dying, they would let her go. DNR didn't mean do not treat. She would still receive active care. If something was wrong, there was something that could be done. So far these decisions were easy to make. The answer was always yes. Yes to antibiotics, yes to a feeding tube, yes to dialysis and changing the access when there were problems.
There are risks and benefits of everything that is being done and Mary, because she is so debilitated, is being subjected to every unwanted side effect from every treatment she is receiving. She has diarrhea from the powerful antibiotics. Her blood pressure had dropped during dialysis and the medicines given for that are taking their toll. The tube feedings had to be stopped periodically because she could not tolerate them. Because of her poor nutritional status, the diarrhea, and being bed bound, there is a strong possibility of skin breakdown.
Now the doctor is talking about goals of care, acute versus palliative, and a plan of care that now can include stopping dialysis, antibiotics, and even discontinuing artificial nutrition and hydration, which he says has limited benefit and comes with risk.
“If we move to supportive care, the care will still be active. It will be directed to keeping her comfortable rather then trying to cure the things that are wrong. We wouldn't be offering this choice if we thought Mary could get better, if she could get back to where she was before she got sick.”
“Then she will die,” says Grace, tears moving slowly down her cheek.
“Death is not the devil in the room,” the doctor answers. “We don't know when your mother will leave us, whether it will be in days, weeks, or months. All we know is that she will not survive the illness. The heart, the lungs, the dementia and now the kidneys tell us that. The devil is how she will die, not whether she will die.”
Silence, absolute silence.
It is over. There is nothing more to say. The ethicist knows this family needs time to think about what they have been told. “When you are ready, you will decide and tell us how you want us to proceed with care. Whatever the decision, be it continuing as we are going, or changing direction and stopping what we are doing, listen to your own voices. You will be here long after our patient has left us. You need to be able to live with what you ask us to do after she is gone.”
A half hour after the family meeting ends, the family asks to meet with the team. It is Gerry, Mary's lifelong partner, who speaks for them. He asks the doctor to stop dialysis, the antibiotics, and blood draws. As for the artificial nutrition and hydration, he asked that they be continued, at least for now.