If you have given considerable thought to your values and wishes, it is time to include your healthcare providers in this discussion, both to obtain more information about your own conditions and to inform them about your decisions. Many patients wait for their physician to bring up end-of-life planning. At the same time, many physicians are waiting for patients to start the conversation.
You can ask for a Medicare covered Advanced Care Planning appointment that is dedicated to these conversations. You can let your provider know you are scheduling specifically to focus on these items.
Obtaining more information. Don’t be afraid to ask direct questions about:
- Diagnoses: What do they mean for my life now and in the future?
- Anticipated Complications: What if things get worse? What might I prepare for?
- Treatments: What benefits can I expect? What are the side effects? Are they curative or more for helping me live with the disease and slow its progression? How long will they go on? How will we know they are working?
- Costs: Does my insurance cover the treatments? Are the treatments accessible to me?
- POLST/DNR: How will I know when it is time to consider a POLST or DNR? Will you help me?
Providing more information. Being a partner in decision making:
- Provide a copy of your Advanced Directive for all providers to have on file.
- Explain why you chose the levels of care that you did in your Living Will.
- Share your thoughts about Life-Sustaining treatments
- Tell them who your Healthcare Proxy is and why you trust them.
- Obtain HIPAA forms from each provider.
- Provide any other Directives for Special Circumstances
Another often overlooked option is to provide a written letter to your providers that explains your perspectives in ways that might not easily come forward in a conversational visit. Katy Butler, in her excellent book, The Art of Dying Well, provides an example that you can access here: Katy Butler dementia letter.
Working together
During the course of any illness, sudden or chronic and long term, there are many providers who are involved in your care. Having everyone working together toward the same essential goals can be difficult but is helped by having taken the steps outlined above. We encourage you to try to include in your conversations, the social workers, home health agencies, the chaplains, physical and occupational therapists, specialists and many others who may become important parts of your healthcare team.