Stepping Up Levels of Care: When is the right time and who decides?
After reading the case, visitors are invited to share how one might approach this situation. There is a "Post a Comment" link at the bottom of this entry and you may use the questions for reflection at the end as prompts.
Lois, a gregarious, charming 88 year old woman, lives with her cat "Pancake" in a multi-unit dwelling. Lois, a widow for 16 yrs, never had children and has survived all of her siblings. Her only family are great nieces and cousins (all of whom are in their 80s/90s) living in Australia. In her younger days, Lois was a patron saint of wayward animals (and a few stray people) and has a life tenancy with Pancake in her current home granted to her by a longtime friend and neighbor, Catherine, who had previously owned the building. A life tenancy means that she owns the right to live in her home, but she does not own an equity interest in the property.
Without any family, another longtime friend and neighbor, Jean, holds her power of attorney for finances and health care. Jean, her husband John, and other neighbors assist with "big" grocery purchases. With the assistance of her "cadillac," an electric wheelchair, she goes out to a nearby street to purchase day to day groceries and sundries. Other neighbors in the home drop in to visit every day or two, to make sure she eats. Her primary care physician, Dr. Anderson noted that if every elder had the "neighbors of the block" to support them as Lois had, we might do OK with our aging population.
Lois is severely limited in her mobility due to a combination of severe kyphosis (curvature of the spine), she is severely bent putting pressure on her stomach and lungs; as well, she has congestive heart failure, which leaves her breathless to walk across the room. Movement is quite difficult. She fell down the stairs 4 years ago trying to reach her "chariot," the cadillac, resulting in a broken collar bone and 6 week hospitalization and rehabilitation, but she recovered and now, manages at home independently with an aide, Lucia, who comes for 3 hours a day, 6 days a week.
Last week, Lois tripped over Pancake's water dish and fell in her bathroom. Her aide, Lucia, had arrived and was making breakfast. Upon hearing a "thud", she went to the bathroom where she found Lois crumpled on the floor, crying "ow". Lucia panicked and wanted to call the ambulance. Lois, not wanting to trouble anyone, insisted that she was fine, and with Lucia's help, Lois got herself up. Her face bruised around her glasses, and her right arm was swollen, she didn't appear to have any broken bones, just a very stiff neck and back. Lucia called Jean, the neighbor in charge of Lois's affairs. Jean stopped by on her way home from work, and surveyed Lois, Jean was quite distressed. Lois looked terribly battered and bruised from the fall and her movement, already challenged, now seemed riddled with pain and discomfort. Lois was adamant that she was fine, but by the next day as her back pain and stiffness increased, Lois was persuaded that a trip to be checked out at the hospital would be OK.
Admission through the ED and a full work up later, no broken bones were found but tests revealed a precarious spinal fracture that threatened instant paralysis if the bone moved the "wrong" way. Lois adapted to life in a neck collar, and by the time, it was ascertained that it was an older injury, Lois had been convinced that she needed to wear the neck collar and that only a slight movement was between her life as she new it and something quite dire. Nonetheless, dreadful bruising aside, she was recovering well and most anxious to return home to Pancake. It had been 7 days, and she was now at the SNF (skilled nursing facility), no longer actually requiring nursing level care, but not quite ready to get a "sign off" from the physical therapy part of the team, the team delayed her stay over a long weekend while addressing the question about where to discharge was addressed, the issue was whether to go to a facility where she would have more supervision and support, such as a nursing home or board and care, or whether it would be appropriate for her to return home to 24 hour care or the level of care she had previously.
Though in the hospital Lois was cared for by a team of hospitalists and specialists; her primary care physician, Dr. A, remained her primary doctor and strongly recommended that she be discharged to a nursing home facility. Concerned about her mobility, the potential danger of another likely fall, the amount of support she needed to attend to her daily activities, the physician did not think that returning home would be in her best interests. Based upon the observation in the hospital, this week's physical therapist did not believe she was capable of returning home.
Lois, on the other hand, was quite aware of her condition, and she believed that she was fine to return home. She was no less mobile than she had been in the past, other than the minor nuisance of a neck collar and the threat of certain death (or paralysis which for her would be like death) if she moved incorrectly, nothing had changed. Lois is determined to return to her comforts of home and Pancake, the cat, whose welfare she was charged with looking after by her dear departed friend, Catherine. Lois lacks the financial resources to afford a nursing home and feels confident that at home, where she has no expenses of rent, she can manage with her limited means until she will be 100. Lois, who is fiercely independent and prefers to care for others rather than being cared for, made her wishes clear, and was growing impatient to get out of the hospital.
Jean, her friend and surrogate concerned for her well being and safety, chose to support Lois's decision to return home. Jean had seen Lois home through much more dire situations, and while the diagnosis of the spine fracture had been scary, Jean is confident that Lois will be able to function at home. Jean favors more care, something that Lois disagrees with, and Jean intends to see if Lucia would increase her hours so that Lois would have more supervision at home. Though she has a roof over her head, Lois has limited means to support herself. Thus, suggestions to increase the hours of her helper are repeatedly rebuffed and she recently reduced a housekeeper from weekly to twice a month to manage her budget. Lois will not leave Pancake (the cat), and no care facility will take a cat. Further, Lois is extremely reluctant, even fearful, of leaving her apartment because it is the only "thing" that she has. With a life tenancy, she retains the right to live in the property until her death though she has no equity in the apartment. Given her limited resources, her housing presents an important asset and she intends to retain it as long as she possibly can and as along as she needs to care for Pancake, this is their home.
Dr. Anderson anticipates more trips to the ED, this is the 3rd this year, and thinks the care possible at home is insufficient. Dr. Anderson is frustrated by Lois & Jean's decision and feels uncertain about how Lois can be best cared for in this situation. Dr. Anderson questions Lois's decision making capacity and wonders what to do at this juncture. Dr. Anderson strongly disagrees with Lois returning home and wonders whether he would be liable for anything happening to Lois if she returns home under his care yet against his advice.
At what point, might it be appropriate for stepping up the level of care for Lois? What might that look like are they options - a staggered approach? Who makes this decision?
Questions for Reflection
How might one approach this situation?
What are the issues raised in this case?
Is this an ethical dilemma? If so, how would you articulate the ethical conflict?
Do you need any additional information? If so, what is it and why/how is that relevant?
What knowledge (ethical, legal, medical, philosophical) might be relevant for analyzing this case?
What framework might be appropriate to assist thinking through this case?
What might be a reasonable path forward? Are there multiple acceptable approaches?
How would each of the different perspectives justify their response?
Please leave comments, ideas, questions, and insights using the comments feature below. When you leave a comment, you may do so anonymously or with your name, but it would be very helpful if you indicated your role/discipline to assist clarifying your perspective. (RN, Geriatric care plan manager, family member, elder, caregiver, MD, MSW, Case manager, etc.)