The Freedom to Care

I got the following email a few weeks ago (details changed for confidentiality reasons): 

Dear Sir, 

I read about your unique practice online.   I have an 91 year old ambulatory father who will not go to a doctor.  He definitely is not well and this is the only way I can get him the attention he needs.   He is adamant about not wanting medical interventions, however he still needs to be seen by someone.  Despite his weakness, he has a strong will and cannot be made to go to a medical office.  I told him I would try to find a physician to come to the house.  

He lives in Augusta.  I would retain you as needed.  Thank you for your reply.

The son who wrote this lives in-state, but a few hours away, and was desperate for some sort of help.  The details of his medical problems were very serious, and I seriously doubted this would be a long-term situation.  It seemed pretty clear that he was dying and wanted to do so at home.

I responded:

Having an 87 year old parent, I understand.  I am also very much in favor of doing nothing when appropriate.  I do wonder if hospice would be a good idea, as they focus (as would I) on quality of life.  Do you think he would be open to having hospice (would free up a lot of money and resources from Medicare)?  My focus would not be on doing anything that would not improve his quality of life (which is what he would probably want). 

The son was happy with this approach, and I set a home visit to see this man.

The home was small but very orderly.  A family friend answered the door and ushered us in.  Pictures of family filled bookshelves, some of which showed people alongside of U.S. presidents, generals, and other important people.  

The man was as expected: thin, frail, but with a very clear and sharp mind.  He was also very suspicious of my intentions.  I explained that I was there at the behest of his son and had no intent of putting him in the hospital, or even doing any tests if that was what he wanted. He relaxed a little at hearing this, allowing me to take a history.  

91 year male with no previous medical problems.  Abdominal distention and blood in BM for past 1-2 months.  Getting weaker over past 1-2 weeks.  

He had been hiding the details of his problems from family and friends, but his weakened state became obvious to everyone around him.  The family friend added details where the gentleman was evasive.  \”You fell down yesterday,\” the friend said after the man had denied the same.  \”What about last week when you couldn\’t get to the car?\”

He cast a scowl at the friend, but nodded.  \”Yeah, I guess I have been falling some.\”

I examined him, leading him to his bedroom so he could lay down and I could examine his abdomen.  He required significant help even with the 20 steps it took to get to the bed.  He let out a big sigh when he lay back on the bed.  The diagnosis came quickly, as his liver was huge and had an irregular, lumpy feel.  

I had little doubt: he had cancer in his liver, probably spread from his colon.

We went back to the den, where we initially had talked.  \”I am going to be square with you.  I think you have a very, very serious problem.  I think you have cancer in your liver.  I\’m sorry to have to say this the first time meeting you, but you seem to be the kind of person who would want the truth, even if it is hard.\”

He didn\’t seem surprised at the news.  \”Yeah, I figured it was something bad.  Cancer, huh?\”

\”Yes,\” I answered.  \”Obviously there is no way to know without doing tests, but your son told me you don\’t want any x-rays or labs done.  I\’m giving you my best guess, but I\’d honestly be very surprised if it was anything else.  I think it\’s probably advanced enough that even if we did tests, there wouldn\’t be much we could do.\”

Again he nodded.

\”I think hospice is the best thing to do at this point,\” I said. \”Hospice gives you access to much better nursing care, maybe a hospital bed, and other resources.  They focus on your quality of life in the next few days or weeks, not on doing procedures that would extend this bad period of your life.\”

His expression became negative.  \”My mother was in hospice.  I don\’t want hospice.\”

\”What was the problem with hospice for your mother?\” I asked.  

\”They took her out of the home and put her in that hospice.\”  he said.  \”I am not leaving my home.  I told you that.\”

I explained that hospice usually didn\’t involve leaving the home, and told him that I would do whatever I could to honor his wish to not leave home.  He agreed to consider this and we wrapped up our conversation.

When I got back to the office I called the son, recounting my visit.  He too wasn\’t surprised at the cancer diagnosis.  \”I\’m coming to town this weekend, so I\’ll try to talk to him about hospice. I agree that this is the best thing.\”

Within two days hospice was set-up.  This morning, two weeks after my visit, I got this email:

Dr. Lamberts and Staff,
My father passed away in his sleep yesterday.  It was like every other night. He was still breathing at 6:00 a.m.  An hour later, he had quietly passed.  Thank you and your staff for your service and your kindness.  Had you not made the home visit, I would not have had access to any medical services for him.  The hospice was exactly what was needed.

I am grateful for the opportunity I had to help where help was not otherwise available.  There is no way my previous practice would have offered me this freedom – the freedom to care for this man in his last days.  I took two hours of my schedule to drive to his house and conduct the visit.  From the business standpoint, this is not a big win for me.  But who cares about business here when I have the opportunity to give help where it was most needed?  

Thank you, sir, for letting me into your home.  Thank you for trusting me when you didn\’t want to trust a doctor.  Thank you for letting me help you stay at home and live out your last days as you wanted them to be.  

Thank you to my nurse who came along to share this experience.  Thank you for the hospice for being sensitive and not using the word \”hospice\” around the man.  Thank you to the son for contacting me.  Thank you to the partners in my old practice who divorced me two years ago and set me free from the American healthcare system that would have shackled me.  Thank you to my patients who have supported my practice and enabled me to keep the business open.

Thank you.

6 thoughts on “The Freedom to Care”

  1. I am writing this with tears pouring down my face. Exactly three months ago, my 86 year old mother was failing, in much the same way that this man’s father was. She was very clear about not wanting a doctor or hospital, but my brother and I did not know what to do, so we brought her to the emergency room, just wanting an answer. She too had cancer that had spread to her liver. How I wish her last days were as you describe here, but it was two weeks of agony as the hospital staff poked and prodded her, when all she had wanted was to die peacefully at home. I am tortured by the memory of her death and wracked with guilt.

    Thank you for being with this man, for respecting his wishes and allowing him to die with dignity in the place he chose. The gift you have given to his family is immeasurable.

  2. Here also with tears, also wishing my father could have experienced this instead of being revived, intubated, etc., etc., etc., upon being found "unresponsive" in bed at 2 AM, despite a DNR in place. He might have died quietly in his sleep, but instead went through 3 hopeless days of hell first.

  3. I wish you were paid for your experience here and that your practice would eventually provide an adequate living for you. Otherwise, these sort of incredible stories will remain all to infrequent.

  4. Thank you for this message. I am primary caregiver for my almost 97 year old aunt. You give me the courage to reinforce her decision to reject care, tests and even physical therapy. I can more easily advocate for her to live — and die — as she wants — even if I have enforced a walker rule for when we go out in public.

    You are an inspiration and remind all of us of what caring for people is really all about. I, too, wish that you and others with medical knowledge were reimbursed for this kind of essential care. Thank you for your courage and willingness to do what you know is right. Many blessings,

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