Rhonda experienced a stroke affecting the left side of her body. She returned to the emergency department (ED) three weeks later due to kidney failure. While only 62-years-old, Rhonda’s long history of hypertension had taken a toll on her body.
Although she was making steady progress in recovering from the stroke, Rhonda appeared depressed. Her two daughters had encouraged her to follow the kidney specialist’s orders and go the ED. The plan was to admit Rhonda to the hospital and have a shunt placed in her arm in preparation for dialysis.
Rhonda did not want dialysis, she wanted to die. Was she competent to make this decision? Was depression compromising her decision-making capacity? Her daughters had stepped up to support their mother, but would not hear of Rhonda’s choosing to give up. Were they respecting her wishes? Was there room for negotiation and consensus? Was it reasonable to establish a timeframe for receiving dialysis?
Here are three important goals to address during the trial period for advanced medical intervention:
It’s never appropriate to prejudge a precarious situation. A life-threatening illness is often uncharted territory fraught with uncertainty and fear. As a family caregiver, you might establish credulity with your patient through the adage, “How do you know you won’t like it (dialysis) until you’ve tried it?” The expectation follows that patients need to try something before ruling it out.
Most therapeutic goals are often achieved by the end of the initial three-month period following a medical emergency. So, encouraging treatment during the first 100 days after a life-threatening situation seems reasonable.
This new normal affords a life reset and a chance for your patient to both see things and think differently from the heart’s perspective. Caregivers have a strong connection to their own hearts and may be able to awaken their patients to listen to theirs. Three key messages stream from the heart:
Making this attempt can help quiet fear. The root cause of Rhonda’s depression stemmed from making comparisons and judgements about who she was in the past in relationship to how she was now. She had not given her heart the chance to feel better about Rhonda. She owed it to herself to trust the support and love her daughters were offering.
Every crisis presents an equal and opposite opportunity. Part of your job as caregiver is to open doors and make your patient’s life seem more rewarding. Through creating a balanced approach in taking the good with the bad, it serves your best interest to reward your patient with kindness. For example, follow each treatment with a ‘treat.’ This could be as simple as stopping for ice cream or having a meal at your patient’s favorite restaurant.
With being open-minded, you might recall: “You can lead a horse to water, but you can’t make it drink.” Your purpose is not to force medical intervention. Offer your message as an open-ended invitation, not an expectation. Don’t be at odds with your patient. By becoming less demanding, you will distinguish whether your patient is simply dealing with reluctance (fear) or being adamant – for a good reason – about not receiving advanced medical intervention.
Trial periods are set with a start and endpoint. Yet, each treatment allows for immediate reevaluation and assessment. Was the patient harmed or did she feel better or rewarded? The trial period can always end sooner if the treatment isn’t tolerated well. ‘The bridge too far’ is when the amount of suffering isn’t worth it. You will know if/when your patient reaches this point as their misery becomes yours.
Nature runs its course as time passes and you also need to awaken to the seasonal changes. With the duty to spring forward and fall back, it’s possible to equate this necessary give-and-take to caregiving. Is your patient surviving well or just getting by? At first, Rhonda’s heart was not ‘in it to win it’ regarding dialysis. If proceeding forward with this treatment, her daughters would need to pay close attention to their mother. Did her heart rally during this trial period or did Rhonda become more discouraged?
Your commitment to taking one season at a time will provide both reassurance for all concerned and room for negotiation. There are no guarantees in how life will play out from one season to the next, but respecting your patient must remain steadfast. Through honoring his or her wishes and observing your patients progress, a consensus may occur. Life will be either tolerable or miserable. This level of certainty provides the directive for the next season.
As you weather each season, view caregiving as unwavering. This means always keeping your patient’s best interest at heart, despite what your mind may tell you to do out of fear. As patients try out the new normal new during the first hundred days, a caregiver’s job is to practice patience and understanding. Attempt to get in touch with your patient’s feeling and grow in your expertise as a caregiver.
There is no shame in trying. Failure is only seen in those held back by fear, not giving themselves the benefit of the doubt. By encouraging family members to take each of the next 100 days as they come, you invite them on a journey. Your job is to be the companion by your patient’s side. This is time well spent for the two of you to bond and may become the ultimate experience of a lifetime. Proceed through the first 100 days with an attitude of making the most of the new normal.