The Week Our Lives Fell Apart: Lessons from a Family Crisis

Palliative Care, Social Work, Care Navigators and "The User Manual"

The week our lives fell apart started just like any other. Sleepless nights with our 18-month old twins, deadlines for work, groceries to buy, the holidays to plan. We had our list of worries just like any family, but until that week, our parents were not on it. My father-in-law Neil was a smoker and Sheila, his wife of 45 years, was having some back pain, but at 70 and 69, they were relatively young and vibrant, the life of the party. Why would we worry? We had no idea how unprepared we were.

Sheila’s back pain was a symptom of colon cancer. It had metastasized to her liver and her brain, which then led to some concerning cognitive problems. The prognosis was poor. On a cold morning in December, one of Sheila’s specialists broke the news to her husband, and a few hours later in a hospital waiting room, Neil suffered a massive hemorrhagic stroke.

The US Healthcare Labyrinth, AI-generated Cartoon

The next several weeks and months passed in a blur of life-or-death decisions that none of us were prepared for or equipped to make. Trying to make sense of all the medical information was overwhelming. Both Neil and Sheila had medical teams that consisted of half a dozen specialists at the top of their field, but no one was in charge. There was a great deal of activity – testing, surgeries, therapies – but very little open communication about prognosis, goals of care or quality of life. My husband and I became Neil and Sheila’s advocates, but we had only the most rudimentary understanding of what they might want for their care. The very idea that such a crisis could hit our family had never occurred to any of us. Neil and Sheila had never discussed their wishes with their sons, and they had made no formal record of what they wanted if faced with a catastrophic health event. We were lost.

The very idea that such a crisis could hit our family had never occurred to any of us.

Three months after her diagnosis, Sheila died. Neil survived, but he was seriously debilitated, unable to communicate and required 24-hour care for the rest of his life. We cared for him until his death in 2015, four years to the day after his stroke. We learned a lifetime of lessons in those four years, and in the hope that others might be more prepared, I will share a few of the most important here.

The US Health System is a Labyrinth, Find a Guide

Palliative care is specialized medical care for people living with serious illness.

If you or a loved one are living with any stage of a serious illness, especially if you are experiencing uncontrolled pain or other symptoms, having frequent ER visits or hospital admissions, or needing help with complex medical decisions, ask for palliative care. Palliative care is specialized medical care for people living with serious illness, focused on relieving pain, symptoms and distress to improve quality of life for patients and families. Provided by a team of specialists at any stage of illness, it can be delivered alongside curative treatments.

In the last few weeks of Sheila’s life, we requested a consultation, and it changed everything. Sheila finally had clinicians that asked about what mattered to her and to us as a family. The circus of unnecessary and burdensome tests ended, her care became more coordinated and her pain crises were addressed. The incredible multi-disciplinary palliative care team at New York’s Mount Sinai Hospital became our indispensable guides, and we continued to benefit from their support during the four years that we cared for Neil.

More than 80% of US hospitals larger than 50 beds now have a specialty palliative care team (though there is significant variation by hospital size and tax status), and palliative care is increasingly available in outpatient clinics and community-based programs.(1) You can learn more about palliative care at getpalliativecare.org.

Social workers are the unsung heroes of the health system and can provide critical logistical support for families.

If you or your loved one expects to make a lot of care transitions, between different levels or sites of care, ask for a social worker. Social workers are the unsung heroes of the health system and can provide critical logistical support for families. After his stroke, Neil spent several weeks in the hospital, first in the neurosurgical ICU, then on a general ward before making his way to the acute rehabilitation unit. Our passionate and accomplished social worker Diane Farquhar facilitated family meetings with Neil’s clinicians and team of therapists (physical, occupational, speech) to discuss rehabilitation goals; she helped us identify and weigh our options when Medicare abruptly required Neil’s discharge to a sub-acute rehabilitation facility; she then arranged for Neil’s transport back to the hospital so he could have one last visit with his wife. Diane was an angel who guided us in our darkest hours as a family and kept in touch for many years after. Diane passed away unexpectedly in 2023, but we know that she lives on in the hearts of all the families she supported.

A care manager is a healthcare professional who acts as a coordinator and advocate.

If you or your loved one will be discharged home with complex medical, therapeutic or daily care needs, ask for a care manager. A care manager is a healthcare professional who acts as a coordinator and advocate, working with patients and families to develop, implement and monitor personalized care plans that address their medical, behavioral and social needs. Sometimes called “Aging Life Professionals” or “Geriatric Care Managers,” care managers coordinate services, educate patients and families, ensure continuity of care, optimize the use of insurance benefits and connect patients to community resources like transportation or financial aid. Unfortunately, care managers are not typically covered by health insurance plans, but if you have the budget to engage one on even a short-term basis after discharge, they can save you a lot of time and worry.

To find a care manager, you can ask your doctor, hospital social workers, or local Area Agency on Aging (AAA) for referrals, or you can search professional directories like the Aging Life Care Association (ALCA) or the Eldercare Locator, a public service from the US Administration on Aging. In next week’s Aging Almanac, we’ll be talking to care manager Dana Reisch, the co-founder and co-president of care management practice Concierge Health about her work.

Do This Now: Create a User Manual for Your Life

In addition to the urgent decisions families may need to make with respect to medical care, a crisis can create a mountain of important administrative work at a time of high stress. If you or your loved one are incapacitated, who will direct the finances, pay the bills, manage the home, make new housing and care arrangements, and how will they know what to do? The final lesson to share is to create a user manual for your life.

Preparing in this way is a fierce act of love for your family.

John Smith Operating Manual, AI-generated Cartoon

A matter of weeks before our crisis hit, Neil and Sheila had by chance completed a basic will and appointed their son (my husband Stephen) as their power of attorney and healthcare proxy. This was a small mercy given an otherwise impossible situation, as it meant that Stephen could quickly take charge of what needed to be done. However, being in charge is not the same as knowing what to do. For one, Neil and Sheila’s financial life was a tangled mess. There were investment accounts, real estate, insurance policies, multiple bank accounts, and keys for safety deposit boxes. There was also a mortgage, a home equity loan, several credit cards and other debts, not to mention the list of accounts for basic utilities. Understanding the complete financial picture involved a scavenger hunt for paperwork and hours of phone calls to gain access to the accounts, apply for benefits and make important decisions about how we would fund Neil’s ongoing care. To this day, we have keys to safety deposit boxes that we haven’t been able to locate.

The user manual should be a folder - accessible and known to a trusted person - containing important documents such as a will (however basic), durable power of attorney and healthcare proxy, a summary of financial accounts, insurance policies, credit cards, utilities and other important accounts, passwords for computers, phones and email accounts, information about your home, vehicles and pets. This is likely to be a useful project even in the absence of a crisis. You can make your own list of items to include, but there are products on the market - some more thoughtful than others - that can guide you through the process. My own family has used a Nokbox system.