‘This pair I worked doggedly to keep together until the end, will be separated, condemned to die alone, and cared for by strangers.’: Social worker urges medical planning, ‘Your loved ones are worth it’

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“As an oncology social worker at a large hospital, I get to care for people who are often in the fight of their life against a terrible disease. I hold hands with people who are newly diagnosed, share joy with those in remission, and mourn with those who run out of options and are taken too soon. Social workers are also trained to intervene with our most vulnerable populations, such as those in poverty or with other barriers to care. In short, I see a lot each week and I don’t rattle easily — but what I saw this past week shook me.

Over this past week, I had the honor of working with a family I will never forget. For privacy reasons, I will keep the details vague. An elderly couple, both with significant health and cognitive impairments, were admitted to my hospital. I fought with everything I had to secure this couple a happy ending. I yelled, begged, and negotiated with insurance companies, residential care facilities, family members, and medical providers to advocate for them. These efforts, along with those of several doctors, nurses and other social workers, got us 99% of the way to a happy ending. I felt such incredible pride I had somehow managed to drag this pair to safety, as positive outcomes are usually the exception and not the rule in oncology.

Unfortunately, due to a variety of challenges and setbacks, I watched in horror as the Leviathan of our legal and healthcare system grabbed this couple and sucked them into the abyss, pulling them out of my hands. This pair, who I had doggedly worked to keep together until the end, will likely be separated, condemned to die alone and confused in separate care facilities, cared for by strangers. It’s hard to describe my feelings of horror at this result, the anger at the injustice of this situation, and the guilt I feel for not being strong enough to hold onto them. It is safe to say, their faces will haunt me for a long time.

A lot of factors contributed to this sad outcome, one of which was inadequate medical and legal planning by this couple. As a social worker and public health advocate, I firmly believe education and information can (and will) change the world by empowering people to make better choices. I also felt driven to write this to create some hope that maybe this didn’t happen in vain — that maybe, just maybe, reading this will allow another family to escape the Leviathan.

Here are a few things I want to share with you. Please read and think about it. I promise you; it can make a big difference for you and your family.

  1. If you have not completed advanced care planning documentation for medical decisions, DO IT NOW. This appoints someone to make your decisions if you can’t, and documents what you want to be done for your care (e.g., ventilation, CPR, intubation). I have seen families torn apart with anger, grief, and confusion when a loved one’s wishes were not clear. I have also witnessed a family fight over whether a dying parent would want pain medication when he was actively dying. As someone who wants ALL THE DRUGS TO NOT FEEL PAIN, I made sure to make that abundantly clear in my documentation. Talking about infirmity, death, and dying is an uncomfortable conversation but completing a short form can save your family a lot of time, money, and grief (and likely score you pain medicine when you can’t speak for yourself!). Many hospitals offer a form of advance directive for health care and many forms are also available online, so please consider doing one now. If you already did one, please look at it every few years to make sure it accurately reflects your wishes. (We had a surprising case when a man forgot to remove his ex-wife as his decision-maker! That made for an awkward talk with his current wife.)
  2. Don’t forget about financial planning. Money ranks right after death as things people hate to talk about. However, I promise you not talking about it solves nothing and will likely only postpone hard decisions when there are even less time and resources. Talk to an attorney about estate planning. Complete documents for who will be able to handle your financial affairs if you cannot. Who knows how to access your bank accounts or checking account? How will bills get paid if you are incapacitated? Does your partner know how to manage ongoing financial affairs? I promise you, once a loved is in a coma otherwise incapacitated, banks do not become even more fun to deal with. Not having financial planning documents in place means your family may have to fight a costly legal battle to manage your affairs.
  3. Invest in good life insurance. I promise you, you get what you pay for. I witnessed a father of two teenaged children pass away peacefully because he knew he had life insurance that meant his children would not be homeless and could one day attend college. You and your loved ones also deserve that peace.
  4. Don’t mistake the health care industry for a long-term care plan. This is not meant to be a political statement on the health care system, but a factual statement meant to encourage you to prepare. If you are banking on a nursing home, the VA, or social security system to care for you in your old age, I have some really bad news. These are all broken and fraying systems that do not offer much in the way of long-term care. Have a plan for where you are going to live when you start to decline. Talk to family about options. Make it a priority to save for when you can’t do everything yourself. If you are single or do not have children (or don’t have children in your life), plan for who will participate in your care planning.  Children are often a natural part of this process so if you did not have them (or do not have them in your life now), you need to plan accordingly about who will play this role.
  5. Do not be afraid to ask your doctor hard questions, particularly about the risks and benefits of treatments. Doctors do amazing work, and many forms of cancer now have cure rates that were unthinkable 20 years ago. However, doctors are often trained to look at how a medical intervention will address a specific problem (e.g., chemo on a tumor), but are often less able to consider how it will affect you, an individual patient with a unique background, social support system, and history. Doctors often shy away from talking about the limitations of their treatments. It’s not fun to talk about the negative and it highlights the failures of their chosen interventions. If you do not ask about side effects, risks, or likely outcomes, then the doctor may not always volunteer that type of ‘bummer’ information. This type of medical ‘don’t ask, don’t tell’ means patients and families have unrealistic or uninformed views of treatment, leaving them unprepared for when things do not work out. In short, ask hard questions and get the information and discuss with your doctor and your loved ones whether the options meet your needs and the quality of life you want for yourself.
  6. Don’t smoke. Get the flu vaccine. Wash your hand often. Sorry, I wouldn’t be much of a public health advocate if I didn’t slip those in too.

I also want to challenge you. Not choosing is making a choice. Electing to postpone any of the above is choosing to not address risks that only increase with age. As one patient said to me, ‘Getting old is not for the weak or poor.’ You are worth it. Your loved ones are worth it.

Love,

Your Oncology Social Worker.”

This story was submitted to Love What Matters by a woman who would like to remain anonymous. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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