I am sorry you are reading this. But your job now is to do what's best for the comfort and care of your family member. And this is going to consume your life for the weeks ahead.
The first choice you have to make is home or institutional hospice. And you need to think about who pays for what. If the patient is on Medicare, read this. And I found these articles to be useful. Medicare does not pay for room and board. Generally your costs will be the same if careing in a home setting or in an institution. The institution may have physical therapy equipment and provide other services, but at home you will be responsible for the day to day care. If you want, you can hire 24/7 home hospice care (probably with another company.) Also, if you have supplemental insurance, they may have different coverage depending upon the care setting. United Healthcare (UHC) may provide about 3 weeks worth of 24/7 home care but 90 days in an institution. It is more expensive for them, but then again who ever said insurance companies make rational decisions.
Regardless of setting, you need to understand exactly what care is going to be provided and how often.
- How often does a nurse come to visit (you will never see the managing doctor)?
- How often does the aid come for washing and other comfort items?
- How often does the social worker come?
You may need an occupational therapist (for instance to help in swallowing) or a physical therapist. You probably will have to fight hard to get these. Remember, the agencies are paid a fixed payment per day. I know this is cynical, but when they do these additional services, they make less money. For instance Amedisys in Lawrenceville (Atlanta) got a new director. He stalled requests for therapists until the patient died. During that time the patient lost all mobility.
Before you sign the paperwork, insist in writing of the services you will receive and how often.
Now you need to prepare for the patient entering hospice care at the setting you chose. You will need to set up three folders:
1) The medical folder. Here you will keep all medical records and medications.
2) The patient care folder. Here you keep the daily log and a calendar of what needs to happen every day.
3) The administrative folder. Here you put all the contacts for everyone, action items, keep the contracts, bills, payments, etc.
Now come the difficult discussions.
- DNR (do not resisitate) You need to describe exactly what can be provided under what circumstances. When you are in the middle of a crisis it is difficult to think clearly. Let the comfort of your patient and their wishes be your guidance. No CPR? Providing oxygen for comfort is generally a good idea. Decide about the use of a feeding tube. What pain medications are appropriate, when. For instance narcotics may relieve pain, but the patient becomes incoherent. When is that appropriate? Put a copy of this doucment in your medical folder.
- Medical Power of Attorney. Which family members have authority to make medical decisions for the patient. Make sure they are all in agreement about what's best for the patient. Put this in your medical folder.
- A funeral home. You need to decide if you want a burial or cremation, visitation at the funeral home or the church. Look for "extras" in the charges. Good homes will include all the basics including home pickup in the price.
Chances are the patient will be coming home from the hospital. At discharge make sure that you have copies of all medical records and medications. And insist you get them right then. If your patient needs to go to the hospital, take your medical folder to the hospital. For instance, St. Joseph's hospital in Atlanta did not check medicines and precribed a new medication that had adverse effects that caused the patient's O2 stats to drop to 55 and blood pressure dropped. St. Joseph's waited 5 days after discharge before releasing the medical records.
Now that the patient is entering hospice, get a medical assessment of the patient's condition. Determine patient goals (walking, feeding, etc.) and a timeline. Develop a plan of care to acheive all goals. Move those to a daily activity schedule and put everything on it:
- Medicines (what, when, how much)
- Medical attention
- Activities / Therapy
- Whatever else is needed (grooming, meals, etc.)
This goes in your patient care folder. And everyday check off what was done, when and note what happened during the day.
At the beginning you will need to micro manage everything. Just because the case worker says a hospital bed was ordered doesn't mean it actually happened. Learn the workflow of everything. In the case of ordering something, who filled out the requisition. Did it get approved? Was it sent (usually fax). Did they get it? When is it scheduled for delivery? Did it happen? After a while you will learn who is dependable and who needs followup.
I've saved the most important part for last. The people who work with your patient are your new family. Treat them with respect and kindness and do give them the benefit of the doubt. Communicate openly. Your goal is patient comfort and care. If someone is not working out over time, don't be afraid, have them replaced.