Kara was a lovely 62-year-old woman whose skin color was flagrantly yellow. A pancreatic tumor was blocking bile secreted by her liver. Her gastrointestinal specialist was in the process of evaluating the spread of the cancer while considering treatment options. Kara was growing impatient while becoming more weak and nauseated. Her best friend, Georgia, accompanied her to the ED, seeking answers and more understanding of Kara’s illness.
Kara was not used to being in the hospital and needing to follow medical procedures. She did not feel like she was getting straight answers from her specialist. What was her prognosis? Was there an overall game plan? Was she supposed to suffer in silence? Placing a stent to open the blockage was being recommended, but the ED physician posed the question, “Is this a viable option for you?”
The stress was beginning to take its toll. Georgia wanted to help, but felt like she was more of a bystander than an active participant or effective caregiver. Georgia was not trained to respond to the “Caregiver’s Code Yellow,” which is the crucial point at which the patient’s medical condition requires a referral to palliative care services.
These tips will help you best understand the benefits of palliative care for you and your patient:
Stand at the Foot of the Gurney
An ED visit presents a crossroad to patients. Your patient looks forward to feeling better, yet challenged to either turn left (return home) or right (hospital admission). As caregiver, you become the traffic cop who directs your patient while at the foot of the gurney. When your patient is ill, most physicians will recommend hospitalization as the standard of care supported by the idea that more is better. As caregiver, what is your “standard of care” that allows your patient to return home? Hint: ‘less is more.”
Kara did not wish to stay in the hospital, but she needed additional assistance at home. Georgia would need help in managing Kara’s pain, nausea and weakness. By standing at the foot of the gurney, Georgia could physically see that there was a physician standing on the right and no one on the left. Georgia needed to immediately rectify this situation by insisting on a palliative care referral. With these services available, Kara‘s ability to return home became a viable option.
Act Like a Referee
As a caregiver, you learn your patient’s strengths and weaknesses in making medical decisions. Many patients know what they want, but have troubling telling their doctors what they need. They often don’t want to disappoint the physicians in charge of their care plan, risking dismissal or condemnation. By ensuring your patient understands both sides to standard medical practice – advance care and palliative care – he or she will freely choose which type of care suits them at any given moment.
Advance care and palliative care are often provided simultaneously and this often can become a tug of war for your patient. The medical-decision process often comes down to receiving more or less testing and treatment. How much evaluation did Kara really need to undergo to learn that pancreatic cancer often results in death? Kara was less worried about dying and more concerned about suffering. As her referee, Georgia needed to determine what was fair and what was out of bounds in her friend’s fight.
Even Out the Medical Condition
Emotions surge in the ER. Caregivers are apt to become flustered at a time when they need to remain focused. A caregiver’s best move is to keep calm and assume the position at the foot of the gurney. This will serve as a reminder to remain open-minded, centered and attentive to the two main prospects your patient is facing: 1) The worst thing that could happen and 2) The window of opportunity. You might determine your patient’s assessment of the situation simply by the look on his or her face.
Kara did not appear to be in distress. Her visit to the ER seemed to provide a window of opportunity as she gained more information and insight into how to best manage her symptoms and stress. Georgia received the certainty that her friend was dying, but was unsure about how she could be the best caregiver for Kara. While she knew Kara did not wish to stay in the hospital, Georgia was ill-equipped to care for her at home.
Respect the Final Decision
Once caregivers ensure that both care plans are equally represented – advance care and palliative care – the code yellow has been successfully enacted. Your patient is able to listen to pros and cons of each care plan and decide whether to turn right (hospital admission) or turn left (return home). As caregiver, you will prefer one side or the other and might coax your patient in that direction. However, the final decision must be your patient’s choice.
Interestingly, Kara had her mind made up before visiting the ER. She simply needed someone to support her decision to stop fighting the cancer and start enjoying life again. She was eager to receive a palliative care referral and was well-satisfied with her ER visit. Georgia wasn’t completely certain whether she agreed with Kara’s choice, but accepted that Kara had to make the final decision.
Caregiving is like parenting – there are no instructional manuals for every possible situation. You may often feel like you are making things up along the way or having to make do with what’s available. There is no official Caregiver’s Code Yellow in the healthcare system. Yet, there is often a dire need for patients to receive palliative care when there is unrest and confusion over the course of your patient’s evaluation and treatment. This call to action prompt you, as caregiver, to enact the Code Yellow. You are responsible for demanding that palliative care be available to assist your patient’s well-being and peace of mind.