What do you do when your loved one is in the hospital, and you feel like something is wrong? Or when you wonder if a test, treatment or medication is right for him/her? Rather than worrying or getting angry, it’s important to speak up. Your knowledge of them and your gut instincts are important signals that should not be ignored.
But how do you speak up? It can be difficult to express your concerns when you don’t have a medical background, or you are in unfamiliar surroundings. It’s especially hard when you don’t know the staff. Information, communication and courage are keys that can help you speak up.
When your loved one is in the hospital, you have an important advantage: you know them. And your intimate knowledge of what’s “normal” and what has been helpful or harmful in treating them can help the staff provide better care, while avoiding inappropriate or undesired tests and treatments.
This family member advantage is one reason many hospitals have adopted patient- and family-centered care. In “truly partnering with patients and families – not only involving them in decisions about their care, but also gaining the benefit of their help and insights to better plan and deliver care – patients can achieve better outcomes…” (American Hospital Association).
Here are some keys to being an effective advocate for your loved one in the hospital:
- Find out as much as possible about what’s happening with him/her. Be ready to describe the changes you’ve seen, and they have experienced. Write things down.
- Find out about the purpose of the tests and treatments and ask questions. Use the nurse as a resource to help you and your loved one understand what the doctor said, and ask about options, and the medications, tests and treatments.
- Use the internet carefully to learn and explore options.
- Talk to the provider(s) with your loved one at key decision-making points.
- Talk with your loved one and with their permission bring in others who need to be involved in decisions, or who can support and advise. A nurse, social worker or spiritual counselor can be helpful when you are having a difficult talk, and can help get additional information.
- Find out what “the right thing” is for your loved one. This is often a series of difficult conversations. But talking about the tough decisions can lighten your load moving forward, as you all have the same information and can work together towards a plan consistent with what your loved one wants. Consider the following questions:
- What are the realistic options, and the possible risks, benefits and costs of each?
- What are their goals for their health? What do they (or would they) want?
- To live as long as possible, not matter the risks and costs?
- To go home and be comfortable?
- Something in between?
- How will these decisions impact you and the rest of the family?
- What will you need to do to be prepared for their discharge to home or another setting such as a rehabilitation facility?
- Enlist the participation of key members of the healthcare team, family or trusted friends in important discussions, as different perspectives can help you clarify what you want.
- Ensure that your loved one and any other key family members have time to talk privately about the final decisions.
The final key to helping your loved one is having courage. Courage is for saying or doing what is difficult but necessary. As an ex-Air Force officer, I think of this as putting on my mental and emotional combat boots, ready for whatever I need to do. I get the information I need, enlist the support, encouragement and prayers of friends and family who have my back, and then I go do what needs to be done to advocate for my loved one in that hospital room. You can be the difference for them.
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.” — Eleanor Roosevelt