The End of Life Inside VA

By: Sally Covington

I want to share my story about the amazing care my partner Tom Moore received at the end of his life from the VA.  The story is, in a sense, a tale of two healthcare systems, Kaiser Permanente, a private, profit motivated system and the Veterans Health Administration (VHA) a mission driven, public system.

Tom, who was 85 when he connected with the VA, had served in the Army during the Korean War but never outside of the United States.  Although being in the Army was, for him, a formative experience, being a veteran wasn’t a major part of his identity.

He had never used the VA and was a life long member of Kaiser in California. Toward the end of his life, Tom suffered from Alzheimer’s disease and worsening chronic obstructive pulmonary disease (COPD.  In dealing with both problems, I was becoming increasingly concerned about the lack of quality care Tom was getting from Kaiser.  Let me give a couple of examples.

As Tom’s COPD was getting worse, the Kaiser seemed inflexible and unable to trouble shoot.  Tom was having a terrible time breathing at night.  His doctor recommended that he sleep propped up at a 30 or 40 degree angle.  So we’d try to prop pillows under his head, but that just didn’t work.  I asked Kaiser for a hospital bed that would raise and lower and help Tom sleep.  What was the answer?  No, that couldn’t be done unless Tom  was on hospice.  Kaiser didn’t have much specialized geriatric support either, and certainly there was no respite or home care services for me.

I had never thought about going to the VA until a friend suggested that that might be an option when she learned Tom was a veteran.  I called the VA.  We provided the necessary paper work and he was enrolled.  We went to a VA clinic in Martinez, California and met with a primary care physician as well as with a team that included a social worker.   The team was very thorough and not only gave Tom a complete physical evaluation but asked what challenges we were having.  After I talked to the social worker, much to my surprise, the VA suggested enrolling Tom in a day care program for people with dementia in Berkeley with which the VA contracted.  Tom went to the program three days a week from nine to four and It was completely paid for by the VA. This was the first glimpse I had that the VA was very different from a private sector healthcare provider.  I felt very lucky that the VA made that service available to Tom and us as a family.  I also felt that every family bearing the weight of caring for someone with progressive dementia should have the same.

The team also told us we could get Tom’s medications from the VA with lower co-pays.  The team asked about Tom’s swallowing and if we would prefer liquid versions of the medications he was taking, if available.  We said yes.  Then three to four days later I found a box of medication at my door, I didn’t have to activate any prescription to get it.

They  also asked about what equipment Tom needed at home to keep him safe.  Then they arrived at our apartment and installed a grab bar in the shower, gave us a shower bench and a raised toilet seat for the bathroom, and a bedside commode.  Everything seemed so geared to helping solve daily problems at home.

Another serious problem Tom had was with chronic obstructive pulmonary disease (COPD).  As I said, Kaiser said it could not provide Tom with a hospital bed, so I called the VA and within a couple of days it was set up in the bedroom and Tom was breathing a lot better.

We were also able to switch to getting care at the San Francisco VA Healthcare System at Fort Miley rather than Martinez, which was logistically a bit easer for us.  That switch was totally seamless and we got an initial appointment with geriatric primary care.  There, we met with a geriatric fellow  (a medical doctor doing a specialization in geriatric care) and then with a geriatric team, a team of four wonderful women that included two physicians, a nurse, and a licensed medical social worker. The purpose of that meeting was to help us understand what services Tom could access as his health declined and to talk about what I might need as his primary care giver.   They talked with Tom alone and I talked with the team and the social worker.

The geriatric fellow was fantastic.  She called me when she had quiet moments to do so  to find out how things were going.  I received no less than three calls from her unprompted just to check in.  So caring and human.  I was stunned.  She was a physician, and I wasn’t calling her she was calling me.

When Tom’s breathing took a sudden, sharp turn for the worse, I took him to the ER at Kaiser.  Kaiser discharged him in an unstable condition on Friday evening and I quickly realized the next morning that Tom needed an emergency admission to a home hospice program.  He couldn’t stand up on his own, I couldn’t lift him.  I was totally panicked.  It was Saturday and because the VA team had been so responsive, I emailed the social worker hoping that she might get and respond to my message, even though it was the weekend.  She did, then called the geriatric fellow, and they both got on the phone with me to discuss the best way to get Tom quickly enrolled in home hospice, which happened the next day.  I am forever grateful for their care, kindness, responsiveness to me and to Tom, who died 10 days after his entry into hospice.

From start to finish, my and Tom’s experience with the VA  was excellent, so seamless and oriented to making things as easy as possible during a stressful time.  While individual clinicians within Kaiser seemed excellent, caring and kind, the system itself lacked the flexibility, integration and problem-solving capacity that the VA demonstrated when we needed it most.