Taking on the challenge of advocating for your loved one can be a daunting task.
The role of an advocate is to support and speak up for those who are not being heard or cannot speak for themselves. This is why it is important to have end-of-life care conversations early on.
When your loved one is terminally ill or close to the end of life, being an advocate becomes even more challenging, especially if they are hospitalized. It is important to have situational awareness so that you can communicate your loved one’s wishes and best interests clearly and concisely.
This means you are paying close attention to all activities related to your loved one as well as asking the medical staff questions about your loved one’s care.
If you bring your loved one to the hospital, it is assumed that you want everything possible to be done to keep them alive. The hospitalist and specialists will order tests, offer a diagnosis, establish protocols, and monitor the effectiveness of treatments. If you refuse a recommended treatment, the specialist may step away leaving you to figure out the next steps concerning care.
As an advocate there are two important questions to ask the doctor:
“Is it medically necessary?”
“How will the results impact the current treatment?”
The answers to these questions will help you make the best decision for your loved one.
A friend of mine, Valerie, had been in the hospital for seven weeks while specialists tried to improve her congestive heart failure. At one point, they decided to repeat a pulmonary artery catheterization to measure the pressure in her heart.
As Valerie’s medical power of attorney, I asked her doctors, “Will the results change the treatment you are presently recommending?” Both the cardiologist and the nephrologist agreed it would not. Valerie thus declined the procedure and decided it was time to consult hospice.
With this decision, she never saw her specialists again.
Another friend, Jeff, had challenging situations with both his parents.
His mother, Marjorie, had trouble swallowing, and suffered from end-stage Parkinson’s Disease. The doctor wanted to perform an endoscopy to see if there was a tumor or some other obstruction. The previous time Marjorie had this procedure it took several weeks for her to recover. After Jeff and his mother talked it through, his mother concluded that, even if they found something, she would prefer not to treat it, so the procedure was declined.
Jeff’s father, Reuben, was admitted to the hospital with chest pains and in an incoherent state. Once atrial fibrillation was ruled out, it was deemed that Reuben had to be transferred to a nursing facility immediately.
In the midst of the current pandemic, the only bed that was available was a one-star facility. Jeff’s family agreed this move was not in his best interest.
The doctor in charge refused to talk to Jeff (who's an MD himself), about other options. So, to prevent this transfer, family members were prepared to physically shield Reuben from unwanted transport while alternatives were being identified. Ultimately the family called in palliative and hospice consultants to help find a solution that was best for Reuben.
Being an advocate takes courage, assertiveness and perseverance.
It requires that you remain calm when you would prefer to scream. On the more challenging days it is essential that you have a healthy way to release the tension and build the resilience necessary to carry on. The Heart Vibration Ritual is a great place to start.
Heart Vibration Ritual
Chanting stimulates your vagus nerve and relieves stress. Chanting from your heart restores your center.
Tips for the Best Possible Outcome
Meeting with your loved one’s healthcare professionals may feel intimidating and unproductive if you aren’t prepared.
Interactions may be rushed if you are trying to grab a few minutes in the hallway, or as you are leaving an appointment.
These tips can set the stage for informative and helpful meetings.
Communicate when making the appointment or checking in that you have questions.
Explain your role and have the proper documentation to receive information
and make decisions. Bring your HIPPA and MPOA documents with you.
Write down your questions. Be concise and direct.
Educate yourself about your loved one’s condition.
Bring your loved one’s medical records, a list of prescriptions and notes on any changes in behavior or symptoms.
Appoint one family member as the main contact.
Take notes, record the meeting on your phone, or consider bringing a friend to take notes for you.
Build a relationship with your loved one’s doctors, nurses and support staff.
Be respectful, even when it’s necessary to be assertive, and appreciative. It goes a long way in relationship building.
Remember, you are an advocate for your loved one and you have the right to ask questions. It is fair to expect adequate time to discuss concerns and receive focused attention during your consultation.
If you don’t feel like your loved one is getting the best possible care, you also have the right to find another doctor.
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