Appropriate palliative services is always a fight.

I am a nurse in one of our Heart Function Clinics in the lower mainland of BC. I've lost count of how many terrible stories of disrespectful, undignified deaths have occurred. I would like to point out that this is not a blaming story. We have many gaps in how our clients receive palliative care and it is the result of a complex mutli faceted problem in which I firmly believe the solution is NOT to increase referrals to Palliative Programs.

Here is a story that I submitted to make a case to the health authority for a quality improvement project.

Ms. Jones had just moved here from Vernon where she lived with her husband for more than 30 years. He had advanced dementia, she had severe aortic stenosis causing frequent Heart Failure exacerbations. They decided to give up their life in Vernon to “do the right thing” and move closer to family. Her husband went to residential care, Ms. Jones went to independent living. Both their wills were done, “affairs were in order”. She found a GP, a cardiologist and began attending the Heart Function Clinic. This family was the shining example of “hoping for the best, but planning for the worst”. They indeed always did the right thing. However over the next year life changed for Ms. Jones, she knew it, her daughter it, her HFC nurse knew it. She began checking things off her bucket list: a butterfly tattoo and blue hair at the age of 80, “people must think I’m nuts! My daughter probably thinks I’m nuts!” She had priorities besides living longer. She couldn’t mobilize the same as before. She began to gain weight, get infections, end up in hospital: her worst fear. She called her nurse at HFC at least once a week, worried about each pound. Worried about the boxes she still hadn’t unpacked. Worried that her husband didn’t understand that she would be gone soon. Dreadfully wanting to avoid hospital but couldn’t get used to the idea of leaving her new home for hospice. She struggled to physically attend HFC, palliative home visits were a battle because of her uncertain prognosis. Her GP didn’t want to treat her volume for fear of speeding up the inevitable future.  Things progressed, her nurse took every worried phone call, every blood requisition to satisfy the physician, and eventually at lunch one day just got in her car and showed up at Ms.Jones home to see how suffering could be a peaceful battle. Together they fought for dignity, respect and ultimately an easy transfer to hospice where her daughter later shared that her passing was “beautiful”.

I had to fight to have her assessed for hospice. Luckily, I won. She was only there for less than 2 weeks before passing. She had home health "symptom management" however the nurses were so poorly trained in the management of HF that she was sent to hospital.... something that was not in alignment with her values and beliefs.

I haven't always been so lucky. I've watched many die 72hrs after being told that they definitely had more than 3 months to live. This pt died in our acute ER.

Philosophies of care and services do not match in the lower mainland of BC. It's time to start delivering on what we preach to the public but really isn't there.