There is an epidemic in our country that causes enormous suffering and struggle for millions of Americans.
Most people are unaware of this epidemic (until they are directly affected by it) and very few people are talking about it. It affects people in almost every community, tearing at the very fabric of our families, and it is going to get worse as our population continues to age.
The epidemic I’m referring to is the fragmented and inadequate care being provided to millions of people of all ages, colors, and backgrounds who are struggling through the challenges of a serious illness or at the end of life.
Our healthcare system is plagued with gaps and inefficiencies that only become apparent when a person’s health starts to decline and more complex needs surface. At this point, patients and families frequently find themselves staring out at a bleak and confusing landscape. They are shell-shocked and incredulous, wondering how they get to this unimaginable place. Many of you know exactly what I’m describing. The rest of you have either been very fortunate, or you and your loved ones have been relatively healthy up to this point.
Far too often, patients and families are left on their own to figure out how to navigate the convoluted healthcare system without the necessary tools, knowledge or guidance. This creates immense stress and dangerous conditions. The health and well-being of the patient suffers, as well as the health and well-being of the caregivers committed to supporting them.
Our healthcare system does a fairly decent job of caring for people who are mostly healthy or are living with a chronic medical condition or two. The traditional office-based model of health care, with the occasional ER visits and/or hospitalizations for necessary procedures or acute illnesses, seems to work fairly well for the majority of people.
The major flaws in the system I’m pointing out don’t typically become apparent until a person has a more complicated condition that involves multiple physicians or involves hospitalizations, creates physical limitations, or results in the need for additional resources in the community. Once things move in this direction, the general lack of coordination and physician oversight become a challenge, at best, and a virtual nightmare for many.
It’s unconscionable that we allow people to struggle so much when with a bit of planning, attention, commitment, and effort we could prevent much of that struggle. Through education, guidance, support, and community, people can learn how to find the resources they need, understand how to avoid the traps they commonly fall into, and experience far more peace of mind, comfort and control as they navigate this unfamiliar and scary terrain.
We need to provide better care to complex and terminal patients at home. We need to provide better education and support family caregivers so they can be more prepared and more effective in their role, and get through the health challenges of a loved one without becoming casualties themselves. Only by doing so can we reduce the unnecessary struggle and suffering, and add value across the entire healthcare continuum, including patients, family members, healthcare providers, healthcare systems and insurance providers.
I’m committed to helping people avoid “falling through the looking glass.” My mission is to help reduce human suffering through education, collaboration, and community building. My podcast, A Life and Death Conversation, and my Facebook Live broadcasts, What’s Up with Healthcare? are some of the tools I employ to fulfill this mission.
I hope you will tune in.
In the meantime, here are three tips to help you avoid some of the pitfalls that so many people encounter along their journey
How to Not get Caught in Healthcare Pitfalls: 3 Tips
- Start preparing for your last days now. Have a conversation with your loved ones or your healthcare agent about what you want or don’t want as your life is coming to an end, and document those wishes clearly in an Advance HealthCare Directive (AHCD) that is legal in your state of residence. Speak frankly with your physician about your wishes, give them a copy of your AHCD, and ask them to commit to advocating for you and ensuring that your wishes are honored (if they are not willing to do this, either find another doctor or request a referral to a palliative care physician.) If you live in a state where Medical Aid in Dying is legal, and this is an option you would like to have available to you in the event you develop a terminal illness, ask your physician if they would be willing and able to support you. If not, consider changing physicians or ask for a referral to a physician who will support you if that time came.
- Learn about the services and options available in your community for people with serious and/or terminal illnesses. Not all communities have the same resources, and not all agencies or service providers are equal. Do your research before you need these services. Learn about the difference between home health care, palliative care, and hospice. Learn about the costs involved in different types of care, including private home care, independent and assisted living, skilled nursing, etc. Consider purchasing a long-term care insurance policy. Get educated and informed before these services are needed to reduce the chances of finding yourself in “crisis mode.”
- By learning from experts in the field who are dedicated to enhancing the lives of their communities, people become better educated and prepared. By hearing the stories of others who have been there before, learning about their individual, but common, struggles and the solutions they’ve come up with to reduce their struggle, people can find tools and strategies to better support themselves and their loved ones. By sharing their journeys with others who have been there, people can become part of a community—they can connect with others who understand them and are concerned about them, who want to help them find more relief and peace on their journey.
The stories of people who are dealing with the challenges brought on by aging, illness or end of life are often riveting, fascinating accounts of everyday heroes. I am constantly amazed and inspired by what I see people doing for others. What one person will do for another in times of need is remarkable. The level of dedication from loved ones is often there, though it is not matched by the dedication of the medical system, so frustration builds, challenges mount, and something gives. Sadly, far too often, it’s the health and well-being of the caregiver that gives, along with the security, well-being, and dignity of the patient.