Andy was just discharged from the hospital, but had to return to the ED when his breathing worsened. At 72, he had smoked most of his life and was also exposed to asbestos while working construction. While his doctors believed he had mesothelioma, the pathology report from a lung biopsy was still pending. Andy did not wish to stay in the hospital again, but didn’t know exactly what to do. Gloria, his adoring wife, became his best advocate and spokesperson with her valuable insight. “We know there’s no cure – we just want to even things out – buy some quality time for Andy.”
To Andy, “even-ing things out” meant not depleting his nest egg and making sure Gloria received compensation from his company for the mesothelioma. Andy was confident he had great healthcare insurance, but understood more time in the hospital would require additional co-pays. He did not want his decline in health to lead to financial ruin.
The emergency physician was sensitive to Andy and Gloria’s situation and offered encouragement, “You’re right! You don’t want to be stupid in this situation.” This seemed to fire Andy up. He was not interested in playing anyone’s fool by believing in false hope. Although Andy met the criteria for hospice, the physician did not wish to convey that all hope was lost.
“Even-ing things out” for Andy and Gloria meant providing them with palliative (pal-ee-ā-tive) care. This service is a godsend for patients who have a vital organ (brain, heart or lung) failing and need to talk specifically about advance care planning. Patients always have the choice to receive treatment at home or in the hospital. Palliative care gives family caregivers the resources they need to care for their patients at home.
Palliative care tools are physical, mental and spiritual resources/devices that allow for a shift in patient care from being patient-centered to person-centered. Consider the following metaphorical tools to better understand palliative care:
Physical Tools to Manage the Disease State
Extra equipment helps manage challenging medical conditions. Opening the door to receiving palliative resources is like having a house-warming party and receiving practical gifts.
Andy will need oxygen with a portable compressor. He may need a walker or a wheelchair along with a hospital bed to help him sleep upright and ease the feeling of suffocation. A nebulizer (to administer medication) will help keep his bronchial tubes open and a cushy pad can prevent bedsores. Reconfiguring the home and installing safety devices would add necessary features to support Andy’s mobility and independence.
Mental Tools to Maintain Control
There is a tendency to hold on too tight when medical situations become dire. Handymen know that the tighter you affix the bolt, the more difficult it becomes to come out. Your patient’s preference is often to live as long as possible without realizing the possibility of prolonging the disease state (morbidity). As a caregiver, you might recognize when your patient is being overzealous in holding on. A ‘compassion wrench’ metaphorically adjusts the tension in the situation, allowing your patient to feel “snug” without suffocation. Compass Navigator Each trip to the ER brings up the same question, “Where do we go from here?” While receiving advance care, the physician makes the next decision – but with palliative care the patient chooses the direction. It was clear in Andy wanted to go home. His ability to make this choice was easier knowing that additional resources could aid his home care. Gloria was onboard with his wishes and realized she would be navigating Andy’s journey from here on out. The palliative nurse would help Gloria remain on course.
The team approach with palliative care allow you and your patient to function in harmony. Your concerns and your patient’s needs are addressed and evened out. If a strong will exists, palliative care allows plenty of room for negotiation while achieving a steady state – not pushing too hard on either side of any disagreement. The willingness to give and take creates balance. This lessens the stress in moving from point A to point B though a straight line and level-headed thinking.
Spiritual Tools to Lift the Heart
The random sounds of wind chimes serve as a call to prayer; a reminder to stop thinking and listen to your heart. The soothing presence of background music can lift your state of being and feels reassuring. Palliative care offers a similar gift of centering and support. It’s not round-the-clock care and it’s not intended to be intrusive. Palliative support places no demands or expectations on your patient and you don’t need to feel negligent if specific doctor’s orders aren’t followed. With any disease state, turbulence occurs. Wind chimes can remind you to stay calm while the winds gust.
Keeping your spirits up will allow you to improve emotional well-being and ease suffering. Misery may love company, but family caregivers don’t need more misery. Caregivers need palliative care to restore their sanity and sense of humor. No-win situations and disease states are curious predicaments that create undue stress. You can either cry about them or laugh them off. Comedy can turn the absurd into rational and tears of sorrow into tears of joy.
Those with chronic or terminal illness deserve the chance to ‘even things out’ by choosing between receiving medical intervention in the hospital and having nursing support at home. Oftentimes patients have the option to receive advance care or hospice care. They are not given the opportunity to ease the transition from one to the other. Many patients are prematurely admitted to hospice and discharged after they improve. This sends the mixed message that your patient’s expected to live. Palliative allows for your patient to wax and wane during the extended “discovery period” of a chronic illness.
Palliative care tools are humanitarian resources that allow a terminal patient to live as a person with special needs. With burdens lifted, caregivers are more able to resume the role of family member than medical assistant. Utilizing palliative resources will allow increased peace of mind for both you and your patient.