Lessons in life and deathShivani Ranchod
How our first patients let us know we were doing the right thing.
When we started Alignd, and building the Alignd palliative care offering, we had years and years of training, research, networking and experience between us. It covered all the fields and skills needed to launch a business like this. And we had planned everything in minute detail.
But until we took on our first patients, we would always be asking: is there really a need for this, what have we left out, what if no one wants change – even if it is for the better?
The change part is hard and has taken a lot of pitches, meetings, testing and tenacity. Our operational processes have strengthened and developed as we’ve gained experience. What has required surprisingly little revision is the patient journey with us, reflecting the patient-centred nature of our design process. And what shines through is that there really is a need for what we’re doing, illustrated by the stories of our first patients.
By the time Sara was referred to us she had been diagnosed with colon cancer that had already spread to her liver. With her husband, Joe, she had been travelling from Tzaneen to Pretoria for treatment with her oncologist. But Joe could see she wasn’t getting any better. Despite Sara becoming weaker and weaker, the oncologist continued with chemotherapy, giving the couple false hope. When the travelling became too much, Joe found a local oncologist who consulted with Sara but simply sent them home saying there was nothing more to do.
“I want my wife to get better. I feel so powerless. I want to find a solution.
When we reached out to them, we were able to connect with Joe – Sara was too frail to talk by then.
But Joe was in denial. “I want my wife to get better’” he said. “I feel so powerless. I want to find a solution.” The truth was he had no idea what he was dealing with. No one had sat down with Sara and Joe and made sure they fully understood the diagnosis and prognosis.
Palliative care doctors call this diagnostic understanding and prognostic awareness. This is what happens when Alignd patients are in the Ongoing Benefit phase (ideally on diagnosis of advanced stage or metastatic disease), together with an explanation of palliative care and how it can help.
We “fast forwarded” Joe to what was actually going on. We also broached the idea of an advance care plan – how Sara would want to die and what her last wishes might be. Joe hadn’t given it any thought and but in fact remembered then his wife wanted to be buried in her marital home, not her parental home. That gave him something practical to do for Sara when the time came, and offered him some comfort.
When Joe really opened up – he had had no support or anyone to talk to – he said he had failed his wife. He said he was even crying in front of his kids. We were able to put the family in touch with a social worker for an extra layer of support.
A week after we had given Joe an opportunity to talk, and be heard, and we had offered guidance and advice in dealing with all that was happening, Sara died.
But Joe had this to say: “I was really lost and in a dark place before I received a call from Alignd. It was a relief, speaking about the unknown and all my worries with someone who was willing to listen. My wife is now buried peacefully where she wanted to be because Alignd’s care partner gave me the direction and courage to iron out certain issues with my in-laws. There was so much care given for my family’s wellbeing.”
What we learnt: As short as Sara and Joe’s journey was with us, it confirmed the need for someone to tell patients and their family the hard truths with compassion, to truly listen and to gently guide.
Personal and practical support
When Mary (83) was admitted into hospital for bowel obstruction and the doctors operated, they discovered she had metastatic ovarian cancer.
Mary knew she didn’t want chemotherapy – it wouldn’t have helped her in fact, and she knew she wanted to go home. That’s when Alignd were asked to take over.
One of our network palliative care doctors, Dr Ed Schutze, consulted with Mary, and planned out her at-home care. The plan included the hiring of a hospital bed at home, oxygen, home-based nursing because Mary’s husband was too frail himself to care for her, counselling and physiotherapy sessions, and twice-weekly doctor visits. Ordinarily, this would be left up to the family to organise and set up.
Alignd firstly ensured the medical scheme authorised these palliative care requirements, and then they arranged all the home-care needs and logistics.
Sadly, with everything at the ready at home, Mary slipped into a coma just before she was due to leave, and the family felt she should stay in hospital. She died two days later, not making it home.
Mary’s family were so relieved that while they were coming to terms with their wife and mother having just weeks left to live, Alignd took all the medical scheme admin and home-care set-up logistics off their hands. They could focus on Mary, and the family, knowing that they did what they could to acknowledge one of Mary’s last wishes – that she wanted die at home.
What we learnt: Illness, dying and death is overwhelming enough for family members. To have to put the rawest of emotions on hold because of medical admin, logistics and payments, is almost inhuman. We have made it our business to offer this relief.
Expert guidance and a patient-doctor-family connection
“It’s one of those ‘I miss my mom’ days,” says Jackie. That’s what she tells Alignd’s care partner when she calls to follow up and check in. It’s been two weeks since Jackie’s mom, Elsa, passed away.
Jackie got in touch with Alignd after finding us online. Her mom, Elsa, had advanced stage liver cancer, and Jackie was looking for palliative care for her. She knew she wanted to be at home.
“My mom died at home, peacefully. And we able to keep COVID out of the house too. We’re grieving of course, but I am so grateful that my mom could be home, with the best care.
Alignd connected Jackie and Elsa with a nearby Alignd.Palliative network doctor, Dr Margie Venter. Dr Venter took them through the Initial Benefit steps: ensuring Elsa and her family had diagnostic understanding and prognostic awareness of the disease, introducing palliative care and drawing up her holistic palliative care plan, as well as putting an advance care directive and an emergency after hours plan in place.
Because of this kind of expert guidance, support and care, Elsa was able to stay at home, and eventually die at home. “My mom died at home, peacefully. And we able to keep COVID out of the house too. We’re grieving of course, but I am so grateful that my mom could be home, with the best care,” says Jackie.
What we learnt: Palliative care doctors offer another level of expertise and support that other medical experts do not. A trained palliative care doctor can be the difference between a good, peaceful death – yes, there is such a thing – and a long, often painful one, where the patient and their family feel lost. Patients deserve to be connected with these specialised doctors, as we’re doing.
The right thing to do
What’s become so clear to us in these first few months is that for too many people, healthcare just happens to them – there is little room for self-determination, and it often leads to a lot of expense, frustration, a lack of certainty and regret. We’ve offered our first patients and their families someone who truly listens, practitioners who provide personal support, and experts who can give specific guidance to them and their family, all at times when they need help and support the most.
We know the need for Alignd is so real, and we know we’re doing the right thing.