Tag Archives: end of life

Palace of Care – Saying No – Part 1

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Photo by Debby Urken on Unsplash

In his professional life he was used to taking charge, of taking control and at times this bled into his personal life as well. His wife’s mother was unwell with widely spread cancer, she had been admitted into the hospice for symptom control of pain, breathlessness, and nausea. He had always been close to her right from their first meeting, he was probably closer to her than he was to his own parents, and even called her Mum. She had always been there for her children and their partners, and he really wanted to be there for her. He wanted to make sure that she was treated right, and he had a small inkling that his manner might come across as intimidating, but that was useful in police work. He just wanted to make sure that Mum was being well looked after, it was what she deserved.

She was a Pasifika lady in her early 60s, with end-stage cancer to her liver, lungs, and many bones. She was the frailest patient in our inpatient unit and I was worried that she might be dying. She was well cared for by her family who were always with her. Her husband of similar age, two daughters and a son-in-law, who I found out was a police officer. He had already caused a bit of a disturbance in the unit as he had spoken in an aggressive manner to some of our nurses, and was impatient. The family were all tired, worried about our patient, and stress levels were high. The family members all seemed to defer to the policeman who had taken on the role of family spokesman. The patient was fatigued but had not slept much in the past days because of uncontrolled pain. The first time I saw her I thought to myself that I wouldn’t be surprised if she crashes quickly.

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Guest Post – Naomi’s Notes – Mama

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Today was shower day. In preparation, I lit the fire and made the room nice and warm,  laid out her clothes so they would be nice and cosy to get into, just like my mother had done countless times over the years for all her children.

After showering, I raced her down the hallway in her wheelchair into the warm room and proceeded to dress her and blow dry her hair.  She was unable to transfer other than to put her arms around my waist and hold onto me as I put her into her favourite chair.

“Well,  now you have to pay me,” I announced.

She looked at me suspiciously until  I said the cost of the shower was two kisses.

She smiled and gave me five kisses and said,  “Oh I have overpaid you.”

“Don’t worry,” I replied, “I have change.”  I kissed her cheek three times;  She laughed just like she used to laugh and then I made her a hot cup of tea.  After the tea she fell asleep in her chair.  She looked exhausted from the effort of showering and slept for an hour.

When people came to visit she would try and sit up and talk with them but after a while she was just so exhausted.  Her kidney function was getting worse.

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Palace of Care – Limited time, big changes

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We had been expecting to admit our patient for a number of days. In the past week she had been troubled by bad pain in her back. We knew that the cancer had spread there already. It hurt her to walk, and she had peed her pants on the way to the toilet. She could not make it in time because the pain of walking held her up.

On admission some medications were changed and by the next morning, they had worked really well. She had slept well for the first time all week, her pain was well controlled, and she was happy to be away from home. Home was full of family, and it was hectic, three generations of family living in the same household, with up to 20 people around her at any time. It was easy to get lost in her own home. She appreciated the opportunity to rest.

Everything we told her was written in her notebook, she wrote down the conversations we had, the medication changes we had made. The notebook was where she made her plans, for everything. She knew that she was unwell, and had already taken it upon herself to plan her funeral. She had always done things differently in her life, and that was not going to change after death. She was planning to break from her usual cultural traditions, and was planning an European style funeral. She would not be going to the traditional place of mourning of her people. She was going to do things in her own way. We talked about Frank Sinatra’s song “My Way.” She jotted it down as something that she wanted to play at her funeral.

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Palace of Care – Love Changes Everything Part 2

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Photo by Jackie Tan on Unsplash

The new normal had been in practice for some months. Receiving chemotherapy, recovering from the treatment, then a short break before the cycle started all over again. It was the short breaks that she looked forward to the most, when they could be free from feeling really unwell, almost normal again. Apart from the changed taste buds, and unrecovered appetite. At least they could enjoy each other’s company and smoke their favourite cigarettes together. Although they came from vastly different backgrounds and family origins, they had been amazed that they had so much in common. “In sickness and in health,” they had said as a part of their wedding vows, and he had certainly fulfilled his part. The doting husband, always there to help, he had never missed any of the appointments. He would text or call her from work during the day. She really needed him during the weeks after chemotherapy, these were her low periods when she had never felt more unwell. At times she almost didn’t want to start the next cycle, but he managed to convince her each time. That this was something that they would be going through together. His devotion had kept her going throughout the tough days and nights. Even in the midst of illness she felt blessed as he was standing by his woman.

It was the week after cycle four, they were just about to enter the recovery phase, and had planned to take a small trip to their favourite beach. They hadn’t been since last summer, things had been too hectic. This would be their chance to get away from the city, and their problems. He had gone to work as usual, he had prepared her breakfast before leaving, allowing her to sleep in. It was getting close to lunch-time and she was looking forward to saying good morning to him, he’d usually call her during his lunch break. No call came. Strange. She texted him but there was no reply. She noticed that there was a message on their answerphone. She listened to the message, it was his boss. Asking her to call him. What’s going on? What’s happened?

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Palace of Care – Mum’s Little Star

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Photo by Sven Scheuermeier on Unsplash

As a little boy his mum would always sing his favourite nursery rhyme to him, as part of his bedtime routine. He was her little star.

We had admitted him only the day before, and we thought that he only had days left to live. End-stage disease had wreaked havoc on his body, and was starting to impinge on his mind. What was important to him? Family above all, his children, his siblings, his parents was whom he spoke about. He was uncomfortable and needed extra medications to control his various symptoms. He told us that he knew his time was short and that his family would be trying to spend as much time as possible with him.

Following the weekend there were less family members around. His mother had become acutely unwell, and the hospital had also found end-stage disease. They made a referral to see if we could admit her as well. The family had to split themselves, with one half holding their vigil in hospital, and the other half holding their vigil at the hospice.  Never the twain shall meet?

A no-brainer from my point of view. Let’s reunite the family, dying son could then see dying mother. A really sad situation, but at least the whole family could be together for both dying family members. Quick logistical arrangements were made and the son was shifted to our largest room. This would allow both beds to be in the same room as each other at times. So that they could all be surrounded by their family members.

No-one could lessen the tragedy of the life event, but at least the family didn’t have to split themselves in two, trying to hold a vigil at two places at once. The overall stress was relieved a small amount as they accompanied their loved ones in their final days.

The son set after two more twilights, and his mother would only experience three more sunrises before her light dimmed for the last time. The family planned to hold a combined funeral service in which many stories would be highlighted, and the warm glow of love would be shared.

Twinkle twinkle little star
How I wonder what you are

Palliverse’s Greatest Hits from Oct 2014 – #getjakbak revisited – Part 1

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Photo by Rob Wicks on Unsplash

What a disaster I thought, as I listened to the referral. A 44 year old man had become unwell in the Pacific Islands and had been urgently transferred to New Zealand for assessment and treatment. He had an abdominal mass lesion which was extremely painful after having had massive weight loss over the previous two months. He had been a great orator and had been destined to be a future leader of his church. He was married without children.

He and his wife had come over two months ago and things had not been good at all.
He had been diagnosed with a large abdominal mass found to be cancer with spinal cord compression and lung metastases. The impression was that there was nothing that could be done medically for him, and that he should try to return back to the Islands as soon as possible as his condition would likely deteriorate quickly.

Travel arrangements were made for him and his wife to return back home in the following week, but he became acutely unwell before he could finish arranging his journey. A difficult situation, thousands of miles from home, with little in the way of family members or support locally. Displaced, stuck, and also critically unwell.

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I think therefore I am? – Milestones

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There is something about the human spirit, some amazing inner strength that people have that allows them to hold on for special occasions. Two major milestones for people are Christmas Day and New Year’s Day. Out of the past ten years I have worked 8/10 of the New Year’s holidays. What usually happened was that no matter what spiritual belief people had they would likely hold on for Christmas Day, and possibly for New Year’s Day and then we would see a large number of people dying once they had achieved their milestone(s.)

Sometimes it can be living through their wedding anniversary, or beyond a loved one’s birthday.
People often will try not to die on a significant other’s birthday, so that the birthday will not be spoiled from thence on.

How does a comatose person even know the date let alone know what the time is? Somewhere deep inside ticks a very accurate body clock? People may be holding on for special occasions such as the wedding of their child, or grandchild. Or it might be the birth of the newest family member.

In Aotearoa New Zealand a lot depends on the national religion. People will hold on for the Rugby World Cup – the Rubgy League World Cup, not so much.

How can a person sense their environment when they physiologically have been made insensate?

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Palace of Care – Late referrals to palliative care are still common

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We had only received the referral the day before. Our nurse went out to see the patient and found him to be likely dying, suffering from pain and great distress. His wife who had been a registered nurse for almost 30 years was still talking about taking him into hospital for further treatments. They were persuaded to come into the hospice by ambulance.

The junior staff had seen him and asked for me to see the family as well, as they just couldn’t get the point across. They thought that he was actively dying, but his wife and daughter were still talking about going into hospital for active treatments, whatever was available.

I walked carefully into the tension of the room and noticed that the patient was breathing heavily, was not able to respond, but otherwise looked comfortable. His daughter was breathing heavily, unable to respond because she was crying, and looked uncomfortable. His wife was breathing quickly, responded slowly to questions, and her discomfort showed on her face.

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Bedside Lessons – 19. Let him cry

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He had asked to talk to us away from the hospice room where his wife was sleeping.

The trainee specialist and I led him to the patient lounge room down the corridor.

We all sat down.

We talked about how his wife was dying, how he was actively supporting everyone else in their life. Especially their three teenaged children, who were barely coping with the pending loss of their mother. He said that he had to be strong, that he would get them all through it…

The floodgate of his face broke, he curled up in pain, and the torrent of tears was released. The trainee reached for the box of tissues, and for his shoulder, and started to speak.

I subtly raised my hand to stop her from saying anything.

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Palace of Care – Final Common Pathway

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Photo by Josh Boot on Unsplash

She keeps on saying that she wants to go home, but we couldn’t cope with her at home.

She’s too unwell to go anywhere, I think that she could die at any time. I fully support your decision to keep her here in our inpatient unit. We’re going to get you all through this. She can’t go home for Christmas but maybe we could bring more of home in to this room?

Yes, we’ve put up the first of the Christmas decorations.

Please bring in more.

There’s something else that we need to talk about.

Okay.

We previously had a conversation with our Oncologist about ACP (Advance Care Planning,) and we talked about resuscitation, CPR. It was a bit tense as our Oncologist felt that it would not be in her best interests. We did not agree, and wrote in the ACP that we wanted full resuscitation.

Right.

Things are different now, and we’d like to reverse the decision.

You want her to be not for resuscitation?

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