March 13, 2013 — Three times this week, I’ve had a conversation with someone trying to help a family member navigate a health crisis …
In my personal and professional life, I am tied to our healthcare system. In my small business, I provide consulting and editorial services to health care organizations. During the first part of my career, I served on multiple management teams in hospitals and rehabilitation organizations, then a decade in consultative sales for a global pharmaceutical company. I am the current board chair for an agency that serves 5,400 individuals with disabilities in medical rehabilitation, child care, group homes, assistive technology and other related services.
While I am not a clinician (nor do I play one on tv), I am frequently asked about hacking through the jungles that are a present day hospital. While it may seem — in the middle of the flora and fauna — that a machete is the only tool that can get through it all. There are some battles not worth fighting. Put your efforts toward what is really important.
Accept that you are the advocate. One friend said to me this week, “When I agreed to help, I had no idea how much responsibility this would involve.” Unfortunately, there is no one person who is going to be responsible for your loved ones care. As much as we want that to happen, no case manager, no floor nurse, no Hospice person knows as much about your loved one as you do. Your family member may be lucky and have that very special person to help you, but that nurse or social worker may also have 30 other “cases” at the same time they are helping you. It may frustrate the heck out of you — which you are the catch-all and the be-all, but you are.
- Keep your paperwork in one place. You will be asked for the same information ad infinitum. And computers will be break down about the fourth time you’ve been asked to repeat yourself. That isn’t necessarily the fault of the person taking the information. You can avoid or at least mitigate this headache by having relevant information organized (even in a three-ring binder) that you carry with you. Obviously, when a person has a chronic illness and is in and out of hospitals and LTC facilities, you can’t carry a 10×10 foot storage unit along, but be mindful of what you are going to need.
- Tell people what you expect. Individuals who choose health as a career are often generous and caring. But they are not mind-readers. If you advocate for a person who cannot, speak up. Tell your caregivers what you — or what you perceive the patient — needs. Many patients, particularly people from the old school, believe that a physician or medical person should never be questioned. Medical providers, while they may be busy, really want your engagement in the care of your loved one. If you miss the doctor at the hospital, make an appointment in his/her office and get your concerns out in the open.
- If offered additional services, take them. First: Many long-term or chronic patients will be assigned a case manager within a facility. Make sure you know who that person is. Case managers often have weekly conferences with all the members of a patient care team. As a family member, you may be able to participate in the weekly conference and meet all the caregivers in one place. Second: If your loved one is offered Hospice services, take them. Many family members are reticent to agree to Hospice services (which are often covered by Medicare and private insurance, depending upon the contract). Some people feel that a patient getting Hospice means that death is imminent. In some cases it may be, but Hospice regs vary and individuals on Hospice may live for weeks or months. The services included in Hospice include personal care, chaplaincy and psychological support for family members as well. Hospice often offers a grief support group to family members after a death. My mother-in-law, who had Congestive Heart Failure and multiple health conditions, went on Hospice several years before she died. She was in long term care, and had multiple admissions to the hospital for CHF. She was in her eighties and was not getting better, and the trips to the hospital were brutal for her. Hospice provided help for the nursing home staff to better manage her CHF episodes and keep her there.
- If confused or concerned about your bill, ask for a sit-down meeting with the hospital billing office. Health bills might as well be written in mandarin Chinese. Hospitals use something called the “charge master” which outlines procedure/equipment costs and is generally not based in reality (thus, the $4 aspirin.) The price you finally pay is based on a number of factors, such as reasonable and customary charges, your negotiated contract, where the planets align, and how the Knicks are doing in the playoffs. If this confuses you, well, you are not alone. (Read Stephen Brill’s wonky analysis of health care in Time magazine here.)
- If still confused, consider hiring a professional. Many individuals like my local friend Brenda offer services to patients and families to help them manage medical bills. Though you may have to pay a small fee, if you save hundreds of dollars it will be worth it.
- Don’t be hard on yourself. You are caring for someone who is ill, and you have all the responsibility. You are only human. Make sure that someone is taking care of you, or that you get a massage when you can or even a nice noon-time walk in the park. Get some respite; get away from the hospital and all the problems, even just for a bit.
I have been a caregiver several times in my life, and of course I have some regrets. At my age now it seems all I talk about with my friends are caregiving issues. Right now things are stable in my family. My husband and I only have one living parent left, and at 82-year-old he is doing just fine. But it can change on a dime any day, and from my experiences both professionally and with family members, I know that it can and does.
Finally, get your affairs in order. Make sure that your family member has a living will and a health care power of attorney on file with his/her doctor, hospital, and with you, the advocate.
Do you want to be kept alive at all costs? Do you want to be on a ventilator? Many people don’t know that short-term ventilators are often used, and get very frightened when the issue is brought up. Know what the lingo means before you deal with this in crisis. Do you want only hydration (water)? If your family members know what your wishes are, this may avoid making a bad situation worse.
When my mother died a year ago, my dad, brother and I had a conference with the Hospice providers and the long term care staff that morning. The clinicians outlined their recommendations for morphine use for my mother. It was a very difficult conversation. Having her living will document in hand was a final gift to us from mom.