When should life support be discontinued, honoring a patient’s right to refuse medical intervention? That’s the million-dollar question. Unfortunately, determining when to educate the patient or caregiver on when to say enough is enough and subsequently exercise this right remains an agonizing part of being a healthcare professional.
Knowing how to approach the patient or caregiver on the subject of when life support should be discontinued is also unique and fraught with ethical implications. Many healthcare professionals seem to give ambiguous advice, often due to preconceived views and personal beliefs. One way to avoid this is to begin this difficult dialogue, with the patient and family, long before the need arises.
The life support conversation.
As hospice professionals, we are trained to honor self-determination, respect the patient and family’s care goals, and be a resource to assist them in their journey. However, as we all know, it’s never quite that simple.
Many times the patient is unable to make his or her own care decisions due to a multitude of factors including an impaired level of consciousness, profound and complex disease state and sometimes just the fear of letting family members down can complicate the process.
Another barrier may be the actual family members and caregivers. They, of course, want what’s best for the patient, but sometimes their own emotions can make patient and caregiver goals unclear.
As healthcare professionals, we must be diligent, honest, and succinct when presenting the facts to the patient/caregiver regarding the benefit of treatments versus the futility of continuing the treatments.
What is “futility?”
There are, of course, the physiological aspects of treatment. When a treatment is clearly futile and it will no longer achieve its “clinical” objective and no longer offers a physiological benefit to the patient, then obviously, there should be no obligation to continue to provide the treatment.
Many in the healthcare community have differing views on the definition of “futility.” Essentially, when treatment becomes futile, it is reasonably clear that treatment will not preserve a physiological function to preserve life. When treatment offers no physiological benefit and/or when treatment no longer fulfills any of the goals of medicine, such as cure, palliate, or improve functional status, then it is a good time to present other options to the patient/caregiver.
Now, this does not eliminate the need to analyze the psychological component. This has much more impact at times than the actual “clinical” component.
Reasons for stopping life support.
For patients, families, and even healthcare professionals, the ultimate decision to forgo treatments including life support may be less clear. Perhaps a patient will live longer on life support. Is now the time to perform a vent wean?
As healthcare professionals, we are doing a disservice to our patients and their caregivers by presenting this question to them without offering insight and presenting facts on the reasons for stopping life support.
We have all heard from our patients/caregivers:
- “I’m not sure if this is what he would really want?”
- “What if there is a cure right around the corner?”
- “What if she really isn’t that bad?”
The “what ifs” can be emotionally crippling for the family/caregiver, and while people may find solace in a “what if” – no matter the situation – they cannot let that possibility dictate what’s best for the patient.
For more family hospice caregiver resources, visit the Crossroads Hospice & Palliative Care website. If you have questions about hospice, please call us at 1-888-564-3405.
DeAnna Looper RN, CHPN, CHPCA
Crossroads Hospice & Palliative Care
Senior Vice President of Clinical Operations
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