Category Archives: Clinical

Palace of Care – Out of Character

Posted on by
Reply
Photo by Kelly Sikkema on Unsplash

He’s been telling me off, he’s never done that to me before in all of our time together. He was grumpy and demanding. He wanted to get up and wanted me to lift him up. I can’t do that I’d hurt my back, he’s too heavy. I’m worried he’s going to fall over. He just won’t listen to reason.

Yes, I’ve noticed a big change. He was joking with us just the other day, now I can’t connect with him at all. I want you to know that he is talking strangely and it is out of his control. I don’t want you to take what he says to heart. It’s the illness talking not him.

Is it the medication change from yesterday?

I don’t think so. I think it probably is his cancer getting worse and making his liver fail. We’ll change his medication to see if it will make a difference, but it might not improve his condition.

A doctor friend told us that when people get closer to dying they become confused. Is that what is happening?

Yes, your friend is correct, that is something we see in our patients as they get closer to dying.

How long do you think he has left? Weeks?

I think he might at most have weeks. With the changes we’ve seen so far I would guess he only had days to weeks left to live. Things can change much faster as we approach the finishing line. He might have much less time than weeks left.

Our older son is taking me to the funeral director to make arrangements. My younger son is coming over but I’m not sure if he can handle looking after Dad. I’ve asked a nurse friend to come over to support my son.

That’s a good idea. I’m going to change your husband’s medications now, to see if we can get him thinking more clearly. His thinking may or may not clear up, no matter what happens.

Palace of Care – Mystery to Solve

Posted on by
Reply
Photo by Hansjörg Keller on Unsplash

I was in my office and I heard the sound of people crying including children. I wasn’t sure which direction it came from, was it in front of me or behind me? The young mother or the older mother? Or was it the grandmother? Three ladies who were all dying in our hospice, had all outlived their prognoses. Prognostication is our best attempt at an educated guess, we are often wrong. That was the case with our three ladies, they were holding on, doing things in their own time. Who had just died?

Listening more closely, there seemed to be many different cries. This ruled out the grandmother who did not have a large family. The other two families were larger. Was it the mother of two or the mother of five? Both patients and their families had spent the last months in and out of our hospice inpatient unit. Both families had initially resisted coming into hospice due to fear of the unknown. After spending weeks with us both families had also been nervous and reluctant about taking their loved one home. They had become scared of leaving a place where they felt safe. Both ladies had successfully made it back home and had spent long periods at home.

When each lady returned it had been in similar circumstances, a deterioration in overall condition, with confusion and agitation prominent. Husbands were stressed out, as they had to take over the running of their homes. Their wives had previously run their households, now the husbands had to take over and they found the job to be harder than going to work. So much to do in so little time, dropping off the kids at their schools and picking them up afterwards. Household chores wouldn’t take care of themselves. They wanted to give it a go before evaluating the need for home support.

I was still unsure, I would have to venture out of my office to get more information.

Palace of Care – Guidance

Posted on by
Reply
Photo by Thijs Schouten on Unsplash

“This will be a challenge,” was my first impression when I first met the son. His eyes were on the brim of tears, his gritted teeth, I could see he was having a hard time. Our staff had told me that our patient, the mother, had deteriorated steadily during her short admission. Ongoing changes over days meant at the most only days left to live. The staff had also told me that the family were keen on our patient having further treatment for her cancer. They had been trying to feed her more as they believed that if she ate more she would be able to fight her cancer more. She had come in because of worsening nausea and appetite. They were so intent on her getting treatment, that there was a huge mismatch between their goals and our patient’s reality.

As I walked into the room and saw our patient for the first time I thought she looked terrible. Like she she could die at any time. There was a lot of distress in the room. The husband was crying disconsolately while holding her hands. The children and their spouses witnessed this in distress. The gathered grandchildren amplified the distress of the two elder generations. The room went quiet as I examined our patient. Weak thready pulse, hands and feet becoming cooler to touch. She didn’t respond to my voice or when I examined her. Her ragged, wet-sounding breaths were made louder by the intense silence of the room. It was as if everyone was holding their breath, myself included. I finished my examination and took my time coming to a diagnosis. I asked if I could sit down on the spare bed before I addressed the whole family.

“I’m worried about your mother. I think she is getting worse. I think her time is getting shorter, and she doesn’t have long to live.” Tears and sobbing around the room. Nodding indicated surprisingly dawning acceptance. “I know that you wanted your mother to have more treatments. I think if she had chemotherapy it would not make things better, but would make her feel worse, and might shorten her time even more.” “I’m sorry, I wish we could do more for her. The best we can do is to keep her comfortable, to calm down her distress.

They handled the bad news well, “please keep her comfortable.”

I was asked by a colleague why the family couldn’t let her go and wanted her to keep on going with treatments. I replied, “It’s because they love her so much. They just don’t want to lose her. Up until two months ago, she had been well, and then she wasn’t. Now she’s dying.”

The counsellor stayed behind to support the family. She arranged for the husband to have some private time with his wife. He said to her, “I’m going to be okay, I will be looked after by our children and grandchildren. I love you. Do what you need to my dear.”

She died 60 minutes later.

Palace of Care – Gasp

Posted on by
Reply
Photo by Agnieszka Stankiewicz on Unsplash

I received the news by email that a brave young lady had died overnight. Before opening the email I knew what it meant. Opening the missive confirmed the bad news. I still gasped a jagged breath in when I read the words. Even after 16 years of full-time palliative care some cases affect me more than others. A good reminder that I am still human. I still feel sad about some cases. I can’t feel too sad though or I wouldn’t be able to carry on. I need to be strong enough to handle the next cases that will come my way. I can’t fall apart after each loss. I allow myself to grieve a bit for each death. I obtain closure. Things would have been much worse if I hadn’t been involved. I have made a difference. I have done enough.

The care I provide can never be perfect. If it was a perfect world my patient would not be dead, they would be alive and living the rest of their lives. Her life was cut far too short, she barely had time to become an adult. I’m not sure if a good death was achieved, but I know that it was much less bad than it could’ve been. There will be tears, even I feel myself blinking some back. Bloody hayfever. Could you go and cut those onions somewhere else please?

I informed my team of the death through our online chat group. I also let them know that I feel sad, that the most experienced member of the team feels sad about this case. That it is okay to feel sad. We’re humans, we know something about loss, it’s okay to feel our emotions. It’s okay to do some extra self-care when we need it.

The other day she wore a vintage Spice Girls t-shirt. I had asked her, “tell me what you want, what you really really want?” We had laughed together and talked about her toys. Her vintage Care Bear, her pillow pal, her Squishmallow. There were no Beanie Babies, yet.

Goodbye brave young lady, safe travels.

Palace of Care – Flashback

Posted on by
Reply
Photo by Marek Studzinski on Unsplash

It had been over two years since we had last met. Memories of the day came back to me in flashes.

I welcomed the family to our venue, meeting family members who had travelled from afar to be there. I remember not wanting to intrude, to be helpful but not in their way. This was her day and I didn’t want to waste any of her precious time.

I recall how it felt to walk back into the room three hours later. With experience, you can measure the emotional temperature of the room in an instant. There was warmth, there was talk of happy memories, there was love. There was laughter, there were tears. Favourite foods and drinks were being shared. There was champagne, there was Strawberry Rocky Road ice cream on sticks. People were gathered for a celebration of a life. A life cut short by major illness, a life interrupted by debility and indignity.

It was still early on in our experience, only the third time we had hosted. It was nice. In the last hour, everyone had the chance to say their goodbyes in the privacy of the bedroom. The doctor arrived and was not constrained by time, he wanted her to take as much time as she needed. It was all about what she wanted, that’s why we had all gathered together. To be with her at the end time of her choosing. Family, friends and healthcare professionals assembled for a final farewell.

The room was full to the brim. The question was asked again, “Are you sure you want this.” The same slurred but steadfast answer, “Yes,” steely resolve obvious in her focused eyes. Making this decision had brought her back not just some control, but had also brought back her determined personality. She had seemed more like herself than she had for years. She was going to leave on her terms, of her own volition.

The last thing she said was, “I love you,” as she hugged her father. She held her son’s hand as she fell asleep for the final time.

Death.

Assisted.

Love.

Relief.

Tears.

Hugs.

Rest.

In.

Peace.

Brave.

Lady.

Palace of Care – Looking Ahead

Posted on by
1
Photo by Arthur Ogleznev on Unsplash

Everything can change so quickly, often with no warning. We can’t prepare the family when we are unprepared ourselves.

He had come in to sort out his pain. Bowel motions were excruciating for him. He had needed laxatives to keep him regular. He had decided to stop his laxatives. No more bowel motions meant less pain he figured. Less pain, less need for pain relief, less side effects. It made good sense to him, and initially, it had worked. It couldn’t last though, what needed to be expelled could not be kept in. When it did come out it had dried out and caused even worse pain. He finally accepted our offer of admission.

The assessing doctor found out the patient had haemorrhoids – painful swollen blood vessels which would be worsened if he had hard dry poos. The fix was to soften them up and make them easier and more comfortable to pass. It took five days to achieve this and heading back home after the weekend looked like a distinct possibility.

After the weekend he looked good. He had taken some successful leave periods at home when the family were off work and school. The next day he was different. He was slow to answer and his replies were in a confused manner. He complained that he couldn’t pass urine. He had repeated bladder scans which didn’t find a full bladder. His pain was worse, he also felt nauseated. He appeared to be in a bad mood and was not as friendly as usual. He was more withdrawn and needed to sleep more. Blood tests were taken in an attempt to find out what was going on.

Severe kidney failure was what the results showed, a life-threatening deterioration, that would likely lead to his death. He was clear he did not want to go back to the hospital. He didn’t want to stay in hospice. He wanted to go home. He couldn’t wait until the doctors came to see him, he had to go home as soon as possible. He’d spent too much time away from home in the last few months.

The doctors went into his room and our patient had gone “AWOL!” He couldn’t wait for the ward round he needed to go home as soon as possible. The team arranged for some urgent prescriptions as we didn’t want him to end up in strife. Good teamwork made it happen.

We received word from his family later in the afternoon that he had died. How had he known?

Palace of Care – Noisy Neighbour

Posted on by
Reply
Photo by Ben White on Unsplash

Her room is across the corridor from my office, the big family room in our inpatient unit. I keep my door open to allow the air conditioning in on hot summer days like today. The temperature is not high compared to a lot of areas but the humidity level makes everything feel much hotter. I am sensitive to sound and noise which is why I usually keep my door closed as I become easily distracted. From the room opposite to mine many waves have vibrated through the airspace between us leading to electrical stimulation of some of my nerves and registering as different activities.

I have heard laughter at least 20 times. There has been a constant hubbub of active conversation in the background, I cannot discern what words or even what language is being used but I can tell from the tone how connected the people in the room are. I have heard the cries of a little baby. There are toddlers talking to their uncles, aunties and grandparents. Older cousins are hanging out with each other during an unexpected day away from school. Was that  guitar I heard just before? I haven’t heard them sing yet, but I am sure they will at some stage. I have heard new visitors being greeted enthusiastically, the sound of people hugging with many kisses to cheeks. A lot of people have brought food.

I am the most distracted in the hour before lunchtime. Over the last two years of intermittent fasting, 11 am is one hour before I break my fast. From my neighbour’s room I can hear and sometimes smell  people sharing food with each other. A shared family meal can be a difficult logistical exercise in the adult life of New Zealanders. Where to meet, how to meet, when to meet, what kind of food to bring? All of these questions require answers and solid plans in order to make things happen. From my position it sounds like my neighbours are having a good time. The warmth in the room is not just the ambient temperature but it represents the shared feelings of love. The people have gathered because their loved one has needed them.

My patient is dying  and there is nothing we can do  to stop it. We have tried over the past week. We stopped medications that were no longer helping. We hoped her deterioration was due to medication side effect but it wasn’t. Was it a reactive depression to the bad news she received two weeks ago? We started her on a fast-acting antidepressant  but it made no difference. Last week I said hello but she didn’t answer me.  The dullness in her eyes told me everything . Time would be short. She was not going to make it home ever again, her family would have to bring a bit of home  into her hospice room. I can hear upbeat music being played in the language of her family’s place of origin.  Now it’s Josh Groban’s You Raised Me Up.                                                                                       
“I am strong, when I am on your shoulders…”

Even after working 16 years full-time in palliative care the stark contrast still hits me. My patient is dying in her room but she is surrounded by so much life. Her little baby, who is vocalising a lot, is in there with a lot of the people who will be bringing her up after her mother dies. Another tragic case but life will go on, another case where we have made a difference.

I think therefore I am? – Who does health information belong to?

Posted on by
1
Photo by Wesley Tingey on Unsplash

This was a question that came to mind after a past colleague theorised about changing a patient’s prognosis to more than six months left to live to stop them from accessing the assisted dying service. I was shocked that they would consider doing something like that. In plain English, it would be telling a lie. Lying to a patient and not giving them your true medical opinion. An opinion that required at least 13 years of training to develop, but one they could consider defiling by not telling the truth. To me, this was wrong on many levels and was one of the main reasons I didn’t miss the ex-colleague much.

Honesty is something our patients deserve. We need to let them know what is going on to the best of our abilities. We are not fortune-tellers and we cannot predict the future but we can provide our best educated guess. People usually want to know how much time they have left as it puts a lot of things into perspective. It makes them focus on what is really important to them. Who is important to them, and who they want to spend their precious time with. What things do they still need to complete given the limited time left? Where they draw the line. What is too much for them to handle? To rob them of these opportunities is wrong.

A person’s prognosis is not owned by the doctor, it is the patient’s prognosis, not their family’s, or their parents’ or children’s. It is their own prognosis. They can do what they like with the information. It is their property and can be used as they see fit. To deny someone the truth about their end of life is such a bad thing to do. You might not agree with what a patient, or what another person chooses, but that does not give you the right to sabotage their plans. They have already lost so much control of their life and a so-called professional would try to stop them from attaining a dying wish.

We are supposed to provide patient-centred care, not doctor-centred care. We exist to serve our patients. They do not exist just to provide us with work, they have lives of their own, stories of their own. It is not about us. Palliative care is supposed to be focused on the needs of the patients and not the needs of the providers. Anything else is just wacko.

Proceedings of the RRIPM Round Table Workshop

Posted on by
Reply

The Rural and Remote Institute of Palliative Medicine (RRIPM) has released a draft of the proceedings of their Round Table Workshop held last month in Canberra. Participants included consumers and community advocates, clinicians and managers, college and peak body leaders, as well as state and federal government representatives.

Recommendations from the workshop will guide implementation of the next phase of the RRIPM project:

  1. Maintain independence, with clearly defined roles and expectations when working in partnership across participating organisations
  2. Advocate for the establishment of a tri-partite group [RACP, RACGP and ACRRM] to strengthen training alignment
  3. Launch a trial network across training ready locations
  4. Consider proposed actions relating to education and training, leadership and governance, capacity building and relationships for implementation in Year 1 to Year 3
  5. Seek guidance from the Office of the National Rural Health Commissioner, and other jurisdictional representatives to identify future funding sources

To receive regular updates on project progress please register your interest with the project team via email rripmproject@anzspm.org.au

rripm-round-table-workshop-summary-of-proceedings_finalDownload

Palace of Care – Making the Appointment

Posted on by
Reply
Photo by Wilhelm Gunkel on Unsplash

Hey, how you doing?

Good. You?

Good thanks. I need to tell you about my patient. They’re very unwell, I think they might only have days left to live.

Right, the cancer effect?

Yeah, it’s causing liver failure and has made them confused. I’m not sure if they’ll be able to talk to you clearly. I think they won’t live long enough to make it through the assessment process. I don’t want to waste your time.

It won’t be a waste of time if being seen is important to them.

They have been so keen to be assessed for assisted dying. I think they’ll still benefit from being seen by you. They will feel understood and that their request has been responded to.

Yeah, it’s still worth it. I’ll come over tomorrow afternoon to see them.

Great, I look forward to catching up with you.