Life’s Toughest Decisions
End of life care discussions are some of the hardest conversations I have with patients and families (except maybe when I tell someone they have cancer, that never gets easy, either).
In our office during a Medicare Wellness visit, you will often hear the question: Do you have a living will? Most of the time, patients just don't want to discuss it and say "No, but my family knows what I want." I want to share with you some insight from my perspective from being in healthcare for 30 years, they may know what you want in general, but when it comes to details, they probably have no idea; and, when you're at the end of life, it's a very stressful conversation to have, and difficult decisions become nearly impossible.
We often say we don't want our loved ones (or ourselves) to suffer at the end of life; most of us hope we just die in our sleep one day rather than have a prolonged illness. When I worked as a hospitalist NP, I was often faced with hard decisions to make on behalf of a patient who could not speak for him/herself; but more often than that, I was relying on a family member who just could not get past emotions to direct the care of the patient.If the patient had filled out the forms ahead of time, it made the decisions so much easier for the family and the providers. I'd like to share an experience from the past with you.
A few years ago, I went to see a patient in an in-patient rehab facility. Mrs. Longevity looked really BAD. She was 95, had a fractured hip, and had refused to go to a nursing home (which is how she somehow got approved for the in-patient rehab facility, by convincing everyone that she was going to go home after rehab). Most of the patients that afternoon were up in their wheelchairs, or up in the room, fully dressed, visiting with family members. Mrs. L. - not so much. I had seen her a couple weeks before, and had admitted her to the unit. At that time, she looked OLD, but not BAD. That's something we all aspire to, right? I mean eventually we have to LOOK old, maybe sooner than later for some of us. This day, she looked dusky and gray; her voice was weak, but she was answering my questions with one-word answers appropriately (which told me she was able to still make her own decisions). She admitted to feeling short of breath, and her daughter just happened to mention that she had vomited after lunch, but only after I asked. After doing a physical exam and finding some major issues, I began to address them with the daughter. She mentioned that the swelling was new, that no one was following the fluid restrictions that had been ordered, and that her mother seems to be getting worse instead of better. She had not mentioned any of these concerns to the three specialists who had already been by that day. They had all written orders for various treatments like diuretics, chest xrays, EKGs...but no one had addressed the real question - how aggressive are we going to be here in this rehab unit where we don't have heart monitors available, or any type of acute care monitoring other than once a day or maybe once a shift vital signs. I was getting concerned because she was clearly now beyond what this unit was set up for.
You see, according to the chart, this patient was a “full code” status, meaning if her heart stopped, she was to be resuscitated. Her daughter was expecting full treatment and recovery, but the staff appeared to just assume that she was going to die in the rehab unit if she didn't make it out to a nursing home soon. The nurses kept saying to me, "she has been like this since admission." Which I knew was not true, since I was the one who admitted her and did her exam on admission. They documented she could walk 50 feet with a walker (but that was with the assistance of THREE people).
So then the conversation took place with the daughter:
Me: Do you think your mother is worse today?
Daughter: Oh, yes, she has been getting worse the last few days.
Me: are you prepared for her to get worse, because from what I see, she is much worse already?
Daughter: Yes, I know...but what do you mean, prepared?
Me: Well, she is so weak, she is not eating or drinking, and she is swelling; these are signs of heart failure; if her heart stops, do you want us to do everything we can to keep her alive?
Daughter: Oh, I can't make that decision, you'll have to ask her because she has always said she wanted to be on machines if it came to that.
ME (to the patient) Ma'am, you appear to be very tired and sick today...
Patient:( in a very weak voice): Yes, I sure am
Me: Well, I think we need to be prepared in case something really bad happens; although I don't think it's happening right now, no one has put your wishes on the chart. If your heart stops or you become too sick to tell us what you want while you are here in rehab, do you want us to do CPR and life support (put you on a breathing machine,) give you life-saving medications, or do everything else other than those things to keep you comfortable? I know, it's a lot to consider, but we don't want to do anything that you do not want. /div>
Patient: Keep me comfortable, I am so tired.
At this point, the daughter (understandably) starts crying, and says she agrees, it's the best choice. She felt she would never survive (nor want to) if ribs were broken during CPR, and would be so weak if she did survive, that she would live the rest of her life in a nursing facility.
At this point, I go out and tell the nurse, who says she has to get a paper signed by the patient, and at that point, she goes back in with the paper to sign, and says "Do you want us to do CPR if your heart stops?"
Patient: YES...(sometimes it's the delivery of the question, sometimes the patient really had no clue what you were asking them).
So at this point, I spoke with the ICU physician who came and talked with the patient and daughter...the patient remained quiet, but the daughter, when presented with the options of comfort care vs full court press, wanted everything done "because I can't send momma to a nursing home, we have to get her better." (Later, according to the staff, she told one of them "I can't send momma to the nursing home because I can't live without her check.)”
So, the patient went to ICU, received a Foley catheter , IV medications and telemetry, xrays, EKGs, and continued her dialysis (yes, she was on dialysis already when she was accepted to this rehab facility). In the end, she did end up on dialysis three times a week, totally bedridden and dependent on others for meals, toileting, turning, etc; but thankfully they decided not to do CPR at the end, approximately 3 weeks later, she passed away in the acute care hospital).
The point of this post is to show that if I had not intervened when I did and addressed the issue, the patient would have likely died in rehab or coded and had CPR done, then transferred to the ICU on life support. By having the discussion, she was at least given the option to go into the hospital for treatment, avoiding both of those scenarios. Did it change anything in the end? Maybe not, except the daughter can have some peace, knowing she did not ignore that her mom was dying, and decisions were made, and her wishes were followed in the end. If her mom had that in place, she would not have been faced with the emotional side of her making decisions. So, please fill out a living will form for your family, it can take a lot of stress off of them in a time like this. If there is no direction, we are required to do CPR and life support until someone tells us otherwise. You can pick up these forms in our office, or go online to https://www.tn.gov/content/dam/tn/tenncare/documents/AdvanceDirectivesLivingWill.pdf
There are instructions for filling out the form at this link, or I will be happy to help you and explain in detail each part.
