The patient's physician writes a do-not-resuscitate (DNR) order when cardiopulmonary resuscitation (CPR) should not be attempted. Because CPR will not be attempted, other resuscitative measures that follow it (tracheal intubation, cardiac monitoring, cardiac defibrillation etc) will also be avoided. The purpose of the DNR order is to prevent unnecessary and unwanted invasive treatment at the end of life.
A DNR order, however, does not mean "do not treat." Rather, it means only that CPR will not be attempted. Other treatments (for example, antibiotic therapy, transfusions, dialysis, or use of a ventilator) that may prolong life can still be provided. Depending on the person's condition, these other treatments are usually more likely to be successful than CPR. Treatment that keeps the person free of pain and comfortable (palliative care) should always be given.
Step 1. Initiate a Supportive Discussion With the Patient
- Establish a supportive relationship with patient and family.
- Identify the surrogate decision maker.
- Open the conversation about end-of-life preferences.
A supportive clinician-patient relationship provides the necessary foundation foundation for end-of-life care. Patients and families speak more openly and are more trusting when they feel empathy and compassion from their caregiver. A caring connection can be enhanced by recognizing the stresses that illness imposes on a patient and family.
As an illness progresses, clinicians are challenged to respond to the patient/family's uncertainties and fears. Initiating an end-of-life discussion with a terminally ill patient or discussing a worsening prognosis with a failing, home care patient often means simply listening to a patient talk about her/his physical decline, and perhaps emotional and spiritual suffering. Even when treatment is no longer effective, the clinician's active involvement by listening and guiding can be a powerful source of comfort.
By encouraging a patient to share their, the subject of death can become less of a taboo.
Appointing a surrogate decision maker is an important early task and can be an effective way to direct the conversation.
Step 2. Clarify the Patient's Questions Regarding Prognosis
• Be direct, yet caring.
• Be truthful, but sustain spirit.
• Use simple everyday language.
The home health clinician must acknowledge end-of-life with directness and compassion. There must be no chance for misunderstanding; when terminal patients are not fully aware of their prognosis, they tend to overestimate their survival, which influences their preferences regarding medical treatment.
Patients and families often require repeated explanations in order to understand a medical problem. Comprehension is enhanced with each repetition. With all medical discussions, it is best to use simple, everyday language and to avoid technical wording. Most patients best understand new information when it is presented at a sixth to eighth grade level.
Although uncertainty complicates decision making, many patients want to know about the uncertainties of their medical condition as well as the established facts. By honestly acknowledging our prognostic limitations, we can build trust.
Step 3. Identify and Document End-of-Life Goals
- Facilitate open discussion about desired medical care and remaining life goals.
- Recognize that as death nears, most patients share similar goals; maximizing time with family and friends, avoiding hospitalization and unnecessary procedures, maintaining functionality, and minimizing pain.
Once a patient and family acknowledge that death is approaching, the clinician's role is to facilitate an open discussion about desired medical care and remaining life goals. As death nears, most patients share similar goals: maximizing time with family and friends, avoiding hospitalization and unnecessary procedures, maintaining functionality, and minimizing pain. Some patients have special requests, such as important visits, desired conversations, or the wish to involve hospice or religious counsel in their final care.
Occasionally, a patient or family will say they want “everything done” to prolong life, regardless of prognosis. In such cases, it is essential to understand the patient's or family's underlying motivation. Comprehensive treatment plans will include, but not be limited to, site of care, effective pain control, the use of CPR and other aggressive treatments, and implementation of palliative care.
Step 4. Discuss and Facilitate the Treatment Plan
- Help the patient understand medical options provided by the physician.
- Discuss the physician's recommendations for appropriate treatment.
- Clarify resuscitation orders.
- Initiate timely palliative care, when appropriate.
Clinicians have the experience of death many times, but a family goes through it only once with a loved one. Patients and families need time to reflect, to feel certain they are making the best choices. During this difficult time, patients and families may harbor seemingly irrational hopes for an improbable reversal. Supportive, un-pressured discussions increase the likelihood that sensible and humane decisions are ultimately made.
As an inevitable death nears, family members must understand that aggressive intervention changes only the time and conditions of death, but not the patient's ultimate fate. In these instances, forgoing aggressive resuscitation allows for a more comfortable and humane death, and represents an act of love, not one of abandonment. Patients and families desire appropriate, caring treatment. If resuscitation and other aggressive interventions will not meaningfully extend life, such care will usually not be requested. The focus then changes to palliation, which offers comprehensive treatment to alleviate pain and to provide maximal comfort.
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