End-of-Life Decision Making
Their names were Joe and Helena, and as we sat in the living room, their anguished expressions and trembling voices said it all. Their mother, Rose, had end-stage cancer and had just come home from the hospital on hospice care. Joe and Helena diligently shared the caregiving responsibility. They were eager to discuss a range of issues with me, but one thing troubled them in particular:
“The worst thing,” said Joe, “is how much she hates the feeding tube in her stomach. It’s so uncomfortable for her when we pour in the food. She has said all along that she didn’t want the tube, but when she was in the hospital they told her it was necessary temporarily, so she reluctantly agreed to it. The problem is, she’s never going to be able to eat on her own, so now the tube can’t come out.” [Read the full article here.]
His sister nodded tearfully and agreed, “When we put the food in, she looks at us pleadingly, asking us with her eyes not to do it. But we have no choice.”
And so began a lengthy, emotional discussion about end-of-life decisions, the goals of care, and the benefits and burdens of treatment. No one had told them that honoring their mother’s wish by removing the tube could be a loving and compassionate decision.
After I left, Joe and Helena continued the discussion throughout the evening and into the night, with each other and with their mother. In the morning they agreed to remove the feeding tube. They kept Rose’s lips and mouth moist, and delivered exquisite comfort care until she died a few days later. At the wake, and several times in the year since, they have expressed how grateful they are that they were able to frame the issue of tube feeding in a way that allowed them to honor their mother’s wishes, make her more comfortable, and give them a sense of peace mixed in with their grief.
Most of us don’t like to think or talk about serious illness and death, so when we find ourselves coping with our own or a loved one’s terminal illness we often feel as though we’re in uncharted territory and have no guideposts by which to navigate. Discussions about what kinds of treatment we want or don’t want at the end of life are likely to be more useful if we have them well before the decisions have to be made. Everyone, no matter how young or how healthy, should have an advance directive and designate a health-care proxy (even my 20-something kids have done so). Designating a health-care proxy is, in fact, especially important. There may be unforeseen circumstances or decisions at a future date, and those decisions will be made by someone; the only way for us to retain control over who speaks for us when we cannot speak for ourselves, is to designate who that person should be.
If it’s too difficult to approach these issues directly in your family, you can start by talking about a news item or a friend’s experience. It’s often less threatening to discuss such issues in terms of someone else. And sometimes it’s helpful to make it a group/family activity (that’s how my kids ended up with advance directives during a family reunion). What’s important is to get the discussion started.
A life-threatening illness can cause families to come together more than they have in years, as it did for Joe and Helena, or there may be so much disagreement and tension that the crisis only makes things worse. In either situation, it’s advisable to reach out to healthcare professionals from different disciplines—nurse, social worker, chaplain, or doctor—who can help us find our way. Culture and religious beliefs inform end-of-life decisions, especially regarding feeding tubes, so it is good to be able to call on people who are familiar with those issues. The transition from curative to palliative treatment is often a difficult one for patients and families, and it’s helpful to have the perspective of professionals who are familiar with the journey. They can help us keep in mind the goals of care, to ensure that treatment decisions conform to those goals.
And in the event of disagreement between the patient’s family and the medical team, a consultation with the hospital ethics committee is advisable. Any interested party can request the involvement of the ethics committee to help resolve disputes.
A life-threatening illness is not only a medical event, it is also an intensely personal journey of the heart and mind. It’s no wonder individuals are likely to approach the experience differently. Families may be torn between hope and despair, denial and acceptance, holding on and letting go, and coming to terms with the family as it is becoming rather than as it was. That is natural. And understandable. And forgivable. When all is said and done, it is not as important to be “right” as it is to be dedicated, humble, and forgiving.
Joyce Davidson, MS, CT
“The worst thing,” said Joe, “is how much she hates the feeding tube in her stomach. It’s so uncomfortable for her when we pour in the food. She has said all along that she didn’t want the tube, but when she was in the hospital they told her it was necessary temporarily, so she reluctantly agreed to it. The problem is, she’s never going to be able to eat on her own, so now the tube can’t come out.” [Read the full article here.]
His sister nodded tearfully and agreed, “When we put the food in, she looks at us pleadingly, asking us with her eyes not to do it. But we have no choice.”
And so began a lengthy, emotional discussion about end-of-life decisions, the goals of care, and the benefits and burdens of treatment. No one had told them that honoring their mother’s wish by removing the tube could be a loving and compassionate decision.
After I left, Joe and Helena continued the discussion throughout the evening and into the night, with each other and with their mother. In the morning they agreed to remove the feeding tube. They kept Rose’s lips and mouth moist, and delivered exquisite comfort care until she died a few days later. At the wake, and several times in the year since, they have expressed how grateful they are that they were able to frame the issue of tube feeding in a way that allowed them to honor their mother’s wishes, make her more comfortable, and give them a sense of peace mixed in with their grief.
Most of us don’t like to think or talk about serious illness and death, so when we find ourselves coping with our own or a loved one’s terminal illness we often feel as though we’re in uncharted territory and have no guideposts by which to navigate. Discussions about what kinds of treatment we want or don’t want at the end of life are likely to be more useful if we have them well before the decisions have to be made. Everyone, no matter how young or how healthy, should have an advance directive and designate a health-care proxy (even my 20-something kids have done so). Designating a health-care proxy is, in fact, especially important. There may be unforeseen circumstances or decisions at a future date, and those decisions will be made by someone; the only way for us to retain control over who speaks for us when we cannot speak for ourselves, is to designate who that person should be.
If it’s too difficult to approach these issues directly in your family, you can start by talking about a news item or a friend’s experience. It’s often less threatening to discuss such issues in terms of someone else. And sometimes it’s helpful to make it a group/family activity (that’s how my kids ended up with advance directives during a family reunion). What’s important is to get the discussion started.
A life-threatening illness can cause families to come together more than they have in years, as it did for Joe and Helena, or there may be so much disagreement and tension that the crisis only makes things worse. In either situation, it’s advisable to reach out to healthcare professionals from different disciplines—nurse, social worker, chaplain, or doctor—who can help us find our way. Culture and religious beliefs inform end-of-life decisions, especially regarding feeding tubes, so it is good to be able to call on people who are familiar with those issues. The transition from curative to palliative treatment is often a difficult one for patients and families, and it’s helpful to have the perspective of professionals who are familiar with the journey. They can help us keep in mind the goals of care, to ensure that treatment decisions conform to those goals.
And in the event of disagreement between the patient’s family and the medical team, a consultation with the hospital ethics committee is advisable. Any interested party can request the involvement of the ethics committee to help resolve disputes.
A life-threatening illness is not only a medical event, it is also an intensely personal journey of the heart and mind. It’s no wonder individuals are likely to approach the experience differently. Families may be torn between hope and despair, denial and acceptance, holding on and letting go, and coming to terms with the family as it is becoming rather than as it was. That is natural. And understandable. And forgivable. When all is said and done, it is not as important to be “right” as it is to be dedicated, humble, and forgiving.
Joyce Davidson, MS, CT
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