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December 27, 2008

Hospital Navigation

Filed under: Commentary — Bob @ 7:10 am

My recent hospital experience with mom was very educational and eye opening. My experience is specifically for Genesys Regional Medical Center in Michigan (USA), and things will be different in other hospitals and other states and countries. And by no means should any of this be taken as a criticism of the care my mother received; she got excellent care. Instead look at it as a tutorial in case you find yourself in a similar situation.

Be Prepared

As a patient you have a few responsibilities for your own care. You should prepare in advance for the unlikely event of entering the hospital on short notice.

Be sure to prepare any “living will” directives e.g. in case I’m unable to make decisions for myself, do not resuscitate me, do not put me on a ventilator, etc. Be sure they are in writing, they have been prepared by an attorney, and such a document is up to date. Apparently the laws around these documents changes every few years, and varies by state. And be sure to bring a copy with you each and every time you are admitted. Hospitals probably keep them on file for legal reasons but they won’t look them up for you. Be sure to discuss these directives with family members. You might be very surprised how often this is a real problem for hospital staff, and can significantly complicate your care.

Prepare any necessary “patient advocacy” documents in advance, and bring copies with you as well. It is very possible your doctors will not discuss medical status with anyone who is not a verifiable advocate. Have this prepared by an attorney and have it reviewed periodically.

Understand that your hospital stay is not a vacation. You are there to receive medical care and your comfort beyond medical attention isn’t a priority. They will wake you up at all hours of the night to run tests or give medications. This is normal and they aren’t trying to be mean. Also it is worth noting that the nursing and related staff are not your maid or butler. Unless you are in intensive care the typical nurse covers five to ten patients and also gets to take breaks to eat. They won’t always be around. If you really need constant care for medical reasons they would have put you in intensive care (which is very intensive, with dedicated nursing staff and constant monitoring). Get used to it, and be sure your family has the same expectation.

Doctors, Nurses, and Hospital Staff

You will likely see a significant number of hospital staff during your stay. Hospital staff tends to be very hierarchical and very specialized. Be sure to understand who you are speaking with when doctors, nurses, janitors, etc. come to visit. In the case of my mom’s hospital stay, she had no less than seven specialists see her regularly. In addition there was a “coordinating doctor” – someone who’s role was to oversee the medical care of the patient. The doctors typically make only periodic visits to each patient, and you might not always see the same specialist from day to day (they don’t work seven days a week). The nursing staff and nursing assistants rotated regularly. The janitors came to clean at least once per day. We even got visits from nursing students and their instructor. There were at least two new faces every day.

Be sure you know who you are talking with and what they can do for you. Talking to a cardiologist about functions of the kidneys won’t get you very far, and will be entirely baffling until you understand that the cardiologist only (only!) looks after the heart and related arterial system. The patient’s kidneys might be failing, but if the heart is doing well the cardiologist will be very upbeat and may even say things such as “everything is looking good” or “things are improving”. This is very deceptive unless you put it in the context of the specialization. At least at Genesys most doctors wore a white coat with their name and specialty embroidered on the pocket. Those who weren’t wearing white coats were also quite easy to identify as a doctor (watch how the nurses react, they know who is who). Every doctor we spoke to was more than willing to identify themselves and their specialty and give us their card for reference. Be sure to ask them for this information and be sure you understand it.

When the doctors would visit mom, the first thing they did is check the medical records and talk with the nursing staff. There is no point in interrupting them while they do this. They need to get updated on the status and review the results of any tests. In mom’s case they ran blood tests every morning and the doctor would read those results before even talking with the patient. Then they move on to a review of the patient. Different doctors have different styles, but most would address mom directly and ask her various questions. As a family member, if you are present for the doctor’s visit be sure to identify yourself and do not hesitate to ask questions or provide information that the patient did not. Often the doctor will speak about test results. Ask for clarification of things you don’t understand e.g. “is a white blood cell count of 15,000 normal? if not, what does that mean?” After the exam they may prescribe new treatment, change the current regime, etc. It all has to be written in the medical record, or it won’t happen.

If you missed the visit of a particular doctor it is possible to ask the nursing staff to page them. It might not be necessary to speak with the doctor every day as in general the nurses can fill you in on the big issues such as new medications or tests scheduled. If you do page the doctor be sure to have specific questions prepared ahead of time.

There should be a “coordinating doctor” who is trying to oversee all the specialists in terms of medical care. This is a very important person to identify and meet with regularly, as this is likely the only person who can really tell you whether the whole situation is getting better or not. Ask to meet with this doctor periodically, and try to be present when he or she does the daily rounds. At Genesys the phrase was “family meeting” and this could be arranged via the nursing staff. You should decide in advance whether this meeting takes place with the patient or without the patient.

The nursing staff make the hospital run. Be sure to identify the nurse and any assistants assigned for that shift. At Genesys these staff rotated around at least once per day. Ask about it if it isn’t clear enough. Have reasonable expectations of the nursing staff; they have a specific role to play for medical care and should not be confused with doctors or janitors. Make friends with the nurses as they are an incredible source of information about all sorts of aspects of the hospital system, medications, doctor’s schedules, etc.

Stay Healthy

Most people in hospital for more than a couple of days are seriously sick. It is no place for healthy people. If you are visiting for an extended amount of time, be sure to keep yourself healthy. We spent two full weeks visiting mom every day, and we came into contact with a lot of sick people. Wash your hands frequently and get plenty of rest and eat well. Watch the nursing staff for any cleanup routine they use, and follow them. There is no point in becoming a patient yourself!

You Aren’t a Doctor

The medical staff at any hospital is far more educated and experienced than you. Don’t assume you need to try to second guess what they are doing. If you think you hear conflicting things from different doctors, ask about it and ask enough questions until you are confident in the answers. Yes, it is possible for them to make mistakes. But this is incredibly rare, and you should not start with the assumption they are screwing up.

The same goes for the nursing staff. They know how to deliver good medical care to cure the ailment. This should not be confused with delivering the best comfort. People who are in the hospital to be comfortable are likely to be terminally ill and following a palliative or hospice program.

On the other hand, you need to be informed about the care provided, and because the specialists are often very focused on their own medical care issues they may not take the “big picture” of comfort into account. A good example with mom’s care was when the pulmonologist needed to insert a larger chest tube to further improve the situation with her collapsed lung. It would involve an incision in the side, some sutures, and likely a fair amount of pain. This procedure was required to treat the collapsed lung, however at the same time we were working with the nutritionist on mom’s digestive issues and the possibility of a feeding tube. The prospects of these two procedures on the same day seemed ridiculous, and when we put the situation in that context the pulmonologist agreed the chest tube could wait.

You do not have to blindly accept the medical care offered. You probably need the care that will be offered, but you (as the patient or as the advocate or as the immediate family) can and should influence the timing and the way the care is delivered.

Thanks for reading! Leave me a comment if you have more useful advice.

December 24, 2008

Not For Wussies

Filed under: Commentary — Bob @ 1:37 pm

Dying is not for wussies.

My mom passed away yesterday. Her decline was quite rapid due to complications from scleroderma, an autoimmune disease. The immune system attacks its own tissues, damaging the soft tissues such as skin and internal organs. Scleroderma is not well understood, and there is no known cure. It doesn’t affect all people in the same way. She was diagnosed ten years ago, and has suffered external symptoms for much of that time, mostly a hardening of the skin around her face and fingers. The last few months the disease started to affect her internal organs as well.

Mom was admitted to hospital on December 1st with likely a touch of pneumonia. Up until that time she lived on her own, and being independent was an important aspect of her quality of life. She wasn’t one to share her health concerns with a lot of people, even family, so when she said it was nothing to worry about and she’d be home in a couple of days we didn’t worry.

A few days went by and she wasn’t going to be discharged. Eileen and I had to shuffle things around to be able to come visit her so there was a couple of days delay until we could arrive. By the time we got to Michigan from Vancouver she was in intensive care due to a partially collapsed lung. The tissue in her lungs was eighty percent useless, fibrosis caused by scleroderma. There was a problem in her throat that didn’t fully close the bronchial passageway and she had been literally inhaling food and drink, giving her coughing fits. Again, this is most likely from complications caused by scleroderma. Her digestive tract wasn’t absorbing food correctly either, leading to malnutrition and a weakened system.

She received excellent care from a battery of specialists, but the damage was irreversible and continuing. She tried to fight, but it was a fight she could never win. In the time span of four weeks my mom went from independent living, looking forward to a family Christmas, to facing her own end. She bravely opted for hospice care at home with family.

The last seventeen days have been the worst of my life, but I wouldn’t want to have been anywhere else. I’m glad I was there for her. And I can definitely tell you, dying is not for wussies.

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