In my work with clients, and in addition to the person whose health is being administered to, I often interact with a spouse, sibling or adult child. Each of these people, in these situations, is acting as a “Care Partner.”
Simply put, a Care Partner is someone who helps another individual:
- Adjust to a new diagnosis such as dementia or cancer
- Communicate with his/her healthcare providers
- Manage crises such as an acute illness or injury that requires hospitalization
- Live with a chronic condition that requires seeking care from a variety of physicians
- Stay healthy by partnering with him/her to implement the behavioral change necessary to promote good health
Note that this role differs from the caregiver who, while also often a family member (or paid professional), regularly looks after a sick or disabled person. The caregiver provides:
- Hands-on care assisting an individual with activities of daily living such as bathing, dressing, toileting and eating
- Medication management
- Household help with cleaning, laundry, meal preparation, bill paying, etc.
How a Care Partner Can Assist in the Hospital
Over the holidays, one of my clients experienced a fall, an emergency room admission, surgery and a transition to short term rehabilitation – all within a four-day span. Fortunately, he had a Care Partner and the two of us were able to assist my client in moving through the hospital’s (often frustrating!) medical and administrative system.
If you, as a Care Partner, find yourself in such a situation, here are a few suggestions:
- Be physically present, whenever possible, so that you may have direct conversations with the multitude of team members involved. Make pro-active phone calls when you can’t be there in person.
- Be sure to ask each team member his/her name and title, as well as the specific responsibilities he/she has in your loved one’s care.
- Identify and communicate with the assigned case manager immediately upon admission, to initiate preparations for discharge.
- If you are not satisfied with the communication, move up the chain of command (physician and/or nursing) until your needs are met. You can also access hospital-based patient advocacy services to assist with problem solving. Remember, your loved one is vulnerable and needs you to act on his/her behalf.
How a Care Partner Can Assist in an Outpatient Setting
Another experience I had over the holidays was a call from a distraught Care Partner, someone whose mother had attended a follow-up surgical appointment alone. The surgeon had performed a biopsy and told the mother that she had cancer. The Care Partner was anxious and fearful and although these feelings were to be expected, they were exacerbated by her lack of information.
Things could have been done differently on many levels. I recommend the following:
- No one should ever attend a follow-up appointment for diagnostic test results alone. Studies have shown that we retain about 60% of the information shared during physician appointments – that percentage is much lower when upsetting information is delivered.
- Physicians should pro-actively request that patients bring a Care Partner with them to follow-up appointments. (I know of physician’s offices that do this; it is not unheard of.)
- Any diagnosis of cancer should include a copy of the pathology report from the physician so that research can begin using accurate data. Like it or not, families are going to turn to online information – the more facts they have the more accurate their research will be.
- All physician appointments should include a precise understanding of the next steps on the journey and what to expect from each. In the case of my client, and while the physician may have done a fabulous job explaining the situation to her, she remembered no specifics regarding the nature of her cancer or of the plan going forward.
Please don’t misunderstand me – I know many, many wonderful healthcare professionals who do a fabulous job of caring for those with whom they come into contact. But these are busy people, working within what are often overly bureaucratic, complicated systems.
A dedicated Care Partner – someone in each of our lives who is aware of and supports our healthcare goals – is a critical member of the team and must be included as well.