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.
While the ER physician suggested Patricia might be dying, the patient’s granddaughter, Tiffany, took offense. Patricia was 87 years old and had been slowing down over the past six months. She had experienced diminished appetite and lost interest in living. She was brought to the emergency department for evaluation and diagnosed with pneumonia.
Patricia seemed to be nearing the end of life, yet she had no significant medical problems. Her daughter, Sandy, looked after her and was concerned about how much she should be doing to help her mom. Patricia sick? This was new to Sandy. Nevertheless, due to age and the doctor’s diagnosis, it was important for the ED physician to inquire about whether Patricia had a living will or advance directive in place prior to hospital admission. If need be, would Patricia be placed on a ventilator? Would CPR be initiated if her heart stopped?
Tiffany believed this type of conversation was out of bounds for Patricia to hear. She wanted to take it outside and verbally brawl with the physician in the hallway. Sandy was torn between both sides of the argument and did more listening than speaking. The resolution: Tiffany and Sandy agreed to wait and see if Patricia needed resuscitation. She would be a ‘full code resuscitation’ until cooler heads prevailed.
If finding yourself in a similar situation, these four tips may help blunt the defense mechanism of anger:
Anger often erupts out of sensitivity
As caregivers handle stress, they build sensitivity and resilience – feelings that easily be offend or hurt. Tiffany was more sensitive and reactive regarding her grandmother, while Sandy portrayed resilience. However, the physician needed Sandy to be more responsive and ask further questions. For example, “What are the pros and cons of my 87-year-old mother being resuscitated?”
Allowing yourself to be too sensitive becomes high risk for your patient; you never want to make medical decisions for them out of misunderstanding or anger. Caregivers must use discretion in matters of life and death while acting from the position of authority – ‘being the adult.’
Patients do not expect to die until they are awakened to the prospect. It’s important for caregivers to maintain high watch for impending disaster and avoid overreacting. Her granddaughter and daughter personified the internal conflict Patricia herself was battling. She had the right to be resuscitated, but did she intend to let her ‘inner Tiffany or Sandy’ have the last word?
Anger sharpens the double-edged sword
Anger stirs passion and can harm your patient. It can make you care too much, or not at all. Anger is ex
hausting and can prove to be counterproductive. Healthcare providers often tune out caregivers and dismiss them as being “irrational.” This leads to feeling helpless. The saying, “Don’t bite the hand that feeds you” is a good rule for anger management. As a caregiver, primarily focus on composing yourself, asking questions and remaining open-minded.
Become more balanced and blunt your anger. Don’t sharpen the edges of anger’s sword by only seeing one side of the situation. Remain open to life’s transitions and increase your understanding of both sides of the end-of-life conversation. You need the capacity to advocate for life or death, depending on the situation.
Anger indicates fear
Most caregivers are afraid of doing something wrong themselves or having others harm their patients. Fear provides a healthy alert: “Warning! Warning! Your patient’s life is in danger!” It also guides your conscience: “I am called to do the right thing.” When acting out of fear, you have the choice to feel helpless or to pay reverence. Anger stirs up impassioned emotions, while fear calls for an awakening.
Tiffany’s emotional upset did not help her mother or grandmother. While studies indicate the futility of resuscitating an elderly patient, there seemed to be no interest in pursuing this concern. Although Tiffany did not have healthcare power of attorney, she was both the most outspoken and least willing to listen. Potentially, Patricia could suffer negative consequences.
Anger calls for a timeout
You might say ‘emergency visits’ and ‘heated arguments’ have similar patterns. There is an emotional response to initial assessment followed by further questioning and reassessment. The time in between allows everyone to gather their thoughts, review the situation and formulate a definite plan of action.
Tiffany was given a moment to sit with her emotions about her grandmother, but she chose not to resolve this upset. She may have won the battle, but would she win the war? If you spend the time stewing or digging in your heels, you have not used this time effectively.
People are prone to react when upset, but upon further consideration often end up wishing that we had responded differently. As a caregiver, allow yourself a timeout with permission to react and respond to any given situation. This time allows you to move from being human to be becoming heart-centered.
Fear can become your best friend or your worst enemy. While anger may get the best of you, fear can allow your conscience to be your guide. By understanding what you are afraid of as a caregiver, will allow you to gain an appreciation of your patient’s fear. Help guide your patient through the end-of-life journey by managing and blunting your own anger.