Affects their partner.
Affects their siblings.
Affects their extended family.
Affects the community belonged to.
Nothing is ever.
Affects their partner.
Affects their siblings.
Affects their extended family.
Affects the community belonged to.
Nothing is ever.
I don’t think of myself as a proceduralist. I don’t like performing invasive procedures as I don’t like to cause pain if I can avoid it. I will do them when they are necessary but it is not a natural fit for me.
The patient was a 39-year-old mother of a 7-year-old son. She was admitted for pain control and I thought she would not have much time left to live. She had known this herself for the past six months. In preparation, she had purposefully reconnected with her ex-husband the father of her child. She wanted to make sure that they would have a loving relationship after she had died. She had been reluctant to come into hospice as she had wanted to spend as much time as possible with her son and other family members at home.
We wanted to sort out her pain as quickly as possible to get her back home. We managed to sort it out within the first three days. This was good as she had met with our social worker and the final adjustments to her will were being made. Her lawyer had been engaged and would be arriving in three days for her to sign the final papers. It was important to have this sorted out as she wanted her house to be transferred to her ex-husband for him to have a house to raise their son in. She had worked hard to buy her house, it was her pride and joy. She wanted her son to have a stable home environment.
Overnight she went to the toilet but on the way back to her room she heard a loud crack from her right hip, followed by overwhelming pain. She could no longer support her weight and managed to call out for help. The nurses needed to use the lifting hoist to get her back in bed, which made her scream.
I reviewed her the following morning and I recognised a familiar pattern. Shortened leg, twisted at a non-anatomical angle, tender to touch and excruciating pain with the slightest of movements. Fractured hip, likely broken through a metastatic deposit. We talked about going to the hospital but she did not want to go anywhere. She said that she had already been to the hospital too many times in the past. She thought her time was limited and she wanted to spend it in hospice.
We gave her stronger pain relief which relieved her pain but because of her poor overall condition, it made her sleepier. She didn’t want to be sleepy, as she still needed to sign her new will. Her son’s future welfare needed to be sorted out before she died.Continue reading
At a palliative care conference years ago the audience was asked to choose between two options. Would you rather die instantly without warning or would you rather know about it and die more gradually? We were instructed to think through both options for a few minutes before a show of hands was counted for each option.
Dying instantly, for example from a cardiac arrest, would mean less suffering for the dying person. It’s possible it wouldn’t be so bad for the person going through it. No fear of what was about to happen to them would be generated as they would be taken by surprise.
Ignorance may well be blissful but would have drawbacks as well. Total loss of control, and inability to finish important business. You’d be robbed of the chance to say goodbye to those important to you. You wouldn’t be able to leave your intended legacy. Death is associated with loss and sudden death is associated with its own set of losses. Those left behind would also lose the opportunity to say goodbye to you, to obtain at least some sense of closure. Survivor’s guilt, “If I had known he was about to die I would never have left them alone at home.” There may be more suffering for your loved ones, so many things they will never be able to say to you again.Continue reading
It’s important to celebrate the small victories we achieve in palliative care, as they are often hard-won. When the natural history of illness is one of disappointment and loss, it is important to mark the times of success. Our patient had not passed bowel motions for 11 days. With each passing day, she had felt less and less normal. She wondered if she would ever Poo again. When constipation has taken its toll for such a long time the treatments will be accompanied by pain. Not having the treatment will lead to more pain. We had tried the standard treatments of pills, soluble powders, and various products to be squirted in private, all with no success. We readied the special injection. If it worked it work quickly. The injection was provided and we all held our bated breath in concert. Within 20 minutes we had achieved a result. The cheering was heard from the doctors’ office, at the nursing station. Yahoos echoed down our corridor. I felt the urge to perform a cartwheel. Smiles all around at the arrival of the VIP – Vast Incredible Poo – time to celebrate. Fireworks were lit and the Poo party began.
“Ahhhhh. You’d better call the water department, because their pipes may be blocked as I just passed a two-metre-long Grogan!”
This story soon spread throughout our hospice.
The next day I met the patient for the first time, “Ah, you must be Mr Grogan?”
I encourage patients to blame me for shortening visit times, “the doctor said my visitors could only stay for 15 minutes as he wanted me to rest more.” I don’t mind being the bad guy, it is difficult for people to turn visitors away but at times they need to do it. Most people understand and will self-limit visits. Others are not so insightful and will outstay their welcome.
“They have come all that way to see me,” which is nice but some of the visits might be driven by guilt. Guilt from not having seen the patient for a long time. Whose needs are being met by the visit, the patient’s or the visitor’s?
Like petrol prices currently, energy is at a premium and people have to be careful how they spend their energy. Their battery continues to flatten and cannot be recharged again. The principles of energy conservation need to be applied to everything they do. Opportunity cost has never been more costly. Spending energy on one thing means something else cannot be done. This is a tough concept to understand unless you have experienced an illness that results in chronic fatigue, such as cancer, organ failure, and old age.
Life is not normal anymore. Life becomes full of trade-offs. The cruelty of life-limiting illnesses is they steal energy away but lead to appetite loss. Just when people need nutrition the most they lose the ability to derive the benefits of eating. Good symptom control can help a person feel more like their usual self, but cannot turn back time.
Simple activities of daily living become anything but simple for unwell people.
Losses accumulate day by day and each one is grieved. An ever-changing situation. It can be hard to catch up with, to know where you are, as things continue to change. Nothing stays the same for long. “Just let me have a small pause, a chance to find my bearings, please, just for a short time let me stop this rollercoaster ride. It’s going too fast and I feel dizzy. Please don’t waste my time or energy.”
Here’s something you could try doing that my writing in community friend Martha shared with me this week:
An assignment that literally changed my students’ lives. Extra credit (optional, and adds points to overall score). Make a list of 50 things you are grateful for in your life. Must use following format:
I am grateful for _________________ because __________________________.
One pt. for each line. Must complete 50. 49 won’t do. Must fill BOTH blanks for each line. You will get 50 points added to your grade.
Example: I am grateful for my grandma, because she makes me breakfast every morning.
I could tell you so many stories about this assignment! Not everyone chooses to do it. And sadly, not everyone is able to think of 50. If not being able to complete the assignment is perceived by the student as a problem, I see that as a good thing. I love coaching them to see things in their life to be grateful for. I can tell when a student has stretched and really starts to “get it.”
At the time I was in Phoenix, AZ, and I often got this response (one of my favorites) included in the list.
I’m grateful for my shoes, because without them I couldn’t walk anywhere when the sidewalk is so hot.
The last question of the assignment: Now that you’ve completed your list, look inside yourself. How do you feel? Has anything shifted?
Once in a while I would get a “no.” But of the 70% who actually answered the last question, almost everyone said that they experienced a shift. Some said they felt happier or more positive, while others said they realized they had so many good things in their lives that they hadn’t actually realized.
Family meetings are common in healthcare settings and are organised to convey a point of view or to try to bring together disparate points of view. These events may be the first chance that some of the key stakeholders, i.e. the family and the healthcare team, have to meet each other. First impressions, as within any first meeting, are important. As you can only meet for the first time once, you’d better do your best to make sure it goes well. To establish a trusting therapeutic relationship between the patient, their family and the healthcare team, rapport must be established quickly. Every encounter can count, but not everything can be planned for.
“Come in, please take a seat.” Oops not enough seats, I didn’t think there would be so many people joining us. “I’ll get some more chairs.”
“No doctor, it’s okay, we’re Islanders, we’re used to sitting on the floor.” He sat down on the floor in a cross-legged position and the rest of his family followed.
While dropping to the floor and re-arranging my legs into a well-versed pose, “I’m an Islander too, and I’m used to sitting on the floor too.” I was joined by my cross-legged team member. Eyes were in contact and were levelled, as were some of the power differentials. Serious issues were discussed in a different but more trusting fashion.
I went to medical school in the previous millennium. Back in the days when the standard dress code was to wear a shirt and tie. To tell the truth, it didn’t matter too much what you wore as it all had to be hidden underneath the doctor’s white coat that we would wear. I probably would’ve gotten away with wearing just a collar and tie underneath my white coat. I would’ve needed to have appropriate pant legs and footwear but probably could’ve gotten away with wearing pyjamas underneath the coat. Of course, this never happened as I was as sheep-like as everyone else and conformed to the standard dress code.
Once I graduated I became braver in terms of dress sense and I started wearing cartoon ties and otherwise quirky ties. I built my collection during my travels. I bought ties in places like Taiwan, Thailand and Kaitaia. Halfway through my first year of work, I went on a clowning trip in China led by Dr Patch Adams. This was followed by a reunion with my childhood friends in South Korea. On my return, I came to a decision. I decided to retire. All of my standard ties. I would only wear my cartoon ones from thence on. Over the next 21 years, I continued to wear Disney characters, Looney Tunes, Superman, Popeye, Fish, and many more.Continue reading
It all started over a cup of tea, that was when they first met. They were at the local dance hall almost 60 years ago. Introductions were made over tea and biscuits and then they danced together for the rest of the evening. He was a gentleman and delivered her safely to her parents’ home. That was the start of their courtship and four years later they were man and wife. They moved overseas and enjoyed the big city life for several years. They toured the whole country and had adventures in many places, even visiting a famous underground city. They made their way home and settled down once the first child was on its way. Followed soon by number two.
They bought a house with a garden in which she planted her favourite camellias. All sorts of colours and she tended the plants with care. Nourishing them with her efforts over many years. The children started school and she could start work again. She worked as a secretary making sure everything ran smoothly in the office, putting her natural organization skills to good work. He organized his workshop well, he liked things to be well planned out. Their strong organizational abilities were another thing they had in common, their children were never late for anything.
English tea was her preferred beverage. There was nothing like a nice hot cuppa to warm you up in Winter. It had always been her favourite drink right from childhood. She wasn’t surprised to find out that tea plants were a type of camellia. She had always wanted to visit a tea plantation to see for herself how similar the plants would be to her camellias, but life was too busy. Everything went according to their plan, their children grew up and left home. Then the grandchildren arrived and the good life improved even more.
The organized couple’s plan worked out well, retirement plans had been worked out long in advance and many days were to be spent in their beloved gardens. The camellias never looked better and responded well to her increased presence. What they hadn’t planned for was for cancer to disrupt their well-considered plans. She became unwell and lost a lot of weight. She needed more help with the gardening as her energy had left her.Continue reading
We’re not the driver of the journey. We are more like a GPS. We are here to help them in their travels. The driver is in charge of where they want to go and can indicate which route they would like to take to the destination. We are there to help highlight hazards along the way as this is a journey we help others with all of the time. We can point out obstructions or detours along the way. We can give a head’s up about what may be troublesome up ahead.
We don’t want you to have any surprises, we will advise you which route may be safer. The aim is for a smoother journey. You need to know what is going on and we will be there to help you navigate your way through foreign territory. We can map things out for you and will make useful suggestions. Whatever happens, we will be there for you and will do our best to understand and fulfil your needs.
Tell me what you need and we will strive to make things happen for you. This is an important final excursion that you are taking and we will be alongside you each step of the way. We know what changes to expect as we enter different phases of the trip. We are also there to provide support to the traveller’s loved ones to ensure they are kept up to date with each leg of the journey. To guide them through the transition points as everything continues to change.
All of the above is what you can expect from our self-caring rechargeable battery-powered Gentle Palliative Steadying system.