What would you like your funeral to be like?

Have you thought about your funeral? Which music you’d like? Which readings? How you might arrive? It all might seem a little morbid. As Dying Matters awareness week draws to a close I’d like to spend a little time considering funerals. The hash tag for this year’s campaign has been #BeReady and as part of this Dying Matters have suggested 5 steps we could all take to prepare for our own mortality. One of these is making a funeral plan…

I’ve planned my funeral. I sat and wrote down my ideas the day after I discovered the metastatic nature of my cancer. I have added to and edited this rough outline as the months have gone by inspired by my life experiences since. The music is probably the most important aspect of a funeral in my eyes. I have chosen a mixture of uplifting and reflective pieces from classical to pop illustrating my eclectic taste and to allow both joyful and sad moments during the ceremony. I have agonised over the readings and have hopefully found some that will give people comfort. I would like a weaved willow coffin and I would like everyone to decorate it with colourful butterflies at the start of the service. I want to wear my favourite Monsoon maxi dress and I definitely need plenty of makeup on. The after show party I would like if possible to be a joyful event. I have already booked the DJ. Everyone needs to get tipsy and have a really good dance. I will be looking down and scowling if the dance floor is ever empty. I would like the room to be decorated with hundreds of photos. I envisage it as a real celebration of my life – lived to the full and with a sense of purpose. And definitely putting a little fun into funeral…

I have been to 2 funerals recently. Firstly my Grandma. She had written a plan. We read this plan after she died and it really made us smile in parts. She wanted her funeral to happen at Huddersfield Crematorium where he beloved Charlie also made his final journey. She wanted her favourite hymns ‘Praise my soul the King of Heaven’ and ‘Abide with me’. She wanted to enter to ‘The dance of the little swans’ from Swan Lake and to leave to ‘Moon River’ by Frank Sinatra. She made sure there was a free bar at the gathering afterwards and that she was toasted with her favourite tipple of sherry. She was also very specific that the sandwiches should be dainty with the crusts cut off. I gave the eulogy. It was incredibly difficult to condense 90 years into just a few pages with history, humour and reflection all combined. One of my pet hates in life is when the funeral celebrant who has usually never met the person gives the eulogy. It feels so impersonal somehow. I was proud to lead Gran’s tribute and I hope she was looking down and pleased with how I portrayed her.

The second funeral was for my dear friend Katie. She was the one person from the cancer world that I had really connected with. She had sarcoma too and when we first got to know each other my prognosis was deemed to be worse than hers. Unfortunately her cancer turned out to be more aggressive than the Oncologists had first thought and she deteriorated fairly rapidly with no further treatment options. Katie’s funeral was beautiful. It really was. She arrived in a horse drawn carriage pulled by two white horses with huge feathers in their headdresses. She had a beautiful white coffin. She entered the historic Crematorium chapel in Leeds on the shoulders of the pallbearers to ‘Diamonds in the Sky’ by Rihanna. Her friends and family led tributes which were both happy and sad. Becca, Katie’s sister-in-law bravely read aloud a letter Katie had written to everyone:

“My dearest friends and family. I will be where you want me to be, in your hearts, your bumble bee, your angel, your star in the sky, a smell, a flower, a feather, a bird. I’m safe, at peace…” As you can imagine there was not a dry eye in the house.

Both these funerals reflected the people they were celebrating so perfectly. And why? Because they were planned by those people. So please no matter what stage you are in your life make a little time to give your funeral some thought. No-one can ever know what is around the corner…

http://www.dyingmatters.org/page/my-funeral-wishes

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Patient Centredness – does it matter and how can we do better?

Last Sunday I sat and held Grandma’s hand as she died. She had advanced metastatic stomach cancer and was 90 years old. Unbelievably throughout her whole illness this was the first time she had ever been admitted. She had always said she wanted to stay at home but in the end the intractable vomiting was not able to be managed adequately in the community, so an urgent admission to the hospice was arranged with Grandma’s agreement.

When I went to see her on the Saturday in the hospice she said to me “I’m not sure I should have come here.” She was really  feeling the sedating effects of the anti-emetics and analgesia, having been such a bright, cognitively intact lady and the fact that she couldn’t articulate herself properly was really frustrating her. As the over protective medical Granddaughter I reviewed her medication with the hospice doctor and agreed a non-sedating regimen of anti-emetics which I took care to explain to Grandma so she was able to understand. That was the last time we had a conversation.

The following day we received that dreaded phone call to come to the hospice as soon as we could and found Grandma comatose. There were no obvious reversible factors and she was commenced on an end of life care pathway after discussion with us. Grandma was put right at the centre that day. The nurses were fabulous and took so much care repositioning her, allowed me to help with some of her personal care and sat with us for ages after she died. This is my vision of perfect patient-centredness with compassionate, caring staff that were competent and genuinely seemed interested in the lady they were looking after even following her death.

The following Wednesday I attended an Oncology out-patient appointment to receive some scan results. My Oncologist had very kindly agreed to see me outside of the usual sarcoma clinic arrangements due to some unmoveable work commitments. I haven’t been seeing Oncology routinely for a number of months and feel disengaged from the whole process. I am sure one of the main reasons for this is because of the psychological distress going to clinic causes me. This may appear irrational but working yourself up before the appointment, being made to sit for hours on end surrounded by people at various stages of their cancer journeys and the whole ‘scanxiety’ process is draining emotionally to say the least. At my last clinic appointment it was the final time I had seen a dear friend and cancer buddy alive. She looked so ill and selfishly speaking seeing her in such a state of disarray was an uncomfortable window into my future.

I think DtM picked up on my reluctance to engage with Oncology anymore especially when he had to convince me it was a good idea for him to examine my abdomen. We discussed the distress that the clinic visits cause and how that could be alleviated. He himself described the Monday morning sarcoma clinic as “a cattle market”. Is this a patient centred way of practising medicine? I completely understand the rationale for seeing all the patients with a particular condition at one time as a clinician but I wonder if we could do better to relieve the associated anxieties? I am pretty sure I am not the only patient who finds the whole process distressing. Could we schedule clinic appointment times better? If a clinic always runs 90 minutes late I’m sure the timings could be altered to help reduce the amount of time patients spend in the dreaded waiting room. Could we reduce the amount of time patients wait for scan results? Possibly by making better use of technology?      

I am lucky to be looked after by some lovely clinicians who try their absolute hardest to be patient centred, but on occasion the NHS system restricts this. Perhaps it is time for a whole new rethink of how we run things to make sure our patients are put firmly in the centre of our practice…