Sister Carla's Palliative Care Diary
MMM handed over Mobile Palliative Care services to local staff in 2013.
Palliative Care Diary April 2011
In our last Diary posting you saw a picture of Maria, our little patient with an eye tumour. I thought you would like to see Maria now. Although she had to have the eye removed, she has completed chemotherapy and the doctors give us great hope for a cure. You can see how happy she looks here compared with our first visit. We hope in time to be able to arrange for her to have reconstructive surgery, but that will have to wait until she gets older.
March was a very busy month for Palliative Care. We had 28 new patients registered during the month. That is almost one a day!
An interesting case was another Maria, a woman of 52 with HIV who had recently been started on antiretroviral therapy. Maria had complained before starting of pains in her feet and legs. This is a peripheral neuropathy that many HIV patients suffer from. In Maria's case it had become much worse since starting antiretroviral therapy (ART).
The ART Team had tried the usual medicines that we use but they weren't helping so they brought Maria to us. The pain was so bad that she was hardly able to walk. We felt that liquid morphine was certainly needed and started her immediately.
We also suggested to the ART Team that one of the drugs she was receiving may be contributing and perhaps a change in regime was called for. They agreed.
Three weeks later we visited Maria at home and imagine our delight when she almost ran out to the car to greet us. We were able to reduce her dose of morphine and hopefully we will be able to discontinue it at our next visit.
Just yesterday we registered Stephen, a 52 year-old man with cancer of the oesophagus.
Stephen had been admitted to Kitovu Hospital for insertion of a gastrostomy tube since he was no longer able to swallow anything.
When we went to see him, he was being cared for by his eldest son, a young man of 20. There are 8 children following him and the youngest is only one and a half years old. The son's question was, "Will Daddy be able to work again? How will we pay the school fees?"
When we go to visit Stephen and the family at home we will have a challenge trying to find solutions to their problems. In palliative care we care for not only the patient, but the whole family as well. These are the kinds of problems we meet every day and we are so grateful to our friends at home who make it possible to help solve some of these problems.
Today was a relatively quiet day on the road. The dry season has set in and we don't have to worry about getting stuck in the mud. Just the dust!!!!
Our first visit today was to a woman with cancer of the cervix who was referred to us from the hospital. She was said to have been discharged on Friday, very weak, and we were anxious to see her in case she was in pain. Imagine our disappointment when we reached her home and they said she was still in the hospital. On follow-up the next day, we found that she had, in fact, gone on Friday but obviously not to her home.Â Perhaps the family had taken her to a herbalist or witch doctor, the poor woman. We will have to continue checking at the home. Luckily she is not far from the town
Our next visit was to James, a new patient we were meeting for the first time. He had been referred by one of our community workers. James is 59 and has cancer of the oesophagus. He had experienced difficulty swallowing for about a year and had not been able to swallow solids for 3 months. He was in great pain and we were so grateful that we now have a steady supply of liquid morphine. We talked to James about having a gastrostomy tube placed for feeding and he said he would think about it and talk it over with the family. As we had given his first dose of morphine on arriving, by the time we left he was smiling and much more comfortable.
Paskazia was next. Passy is 46 and has cancer of the cervix. She does not have pain but has frequent bouts of bleeding and is seriously anaemic. Radiotherapy would be a solution to her problem, but unfortunately Passy had been in an accident some years ago and had to have a pin placed in her hip. This makes radiotherapy out of the question. We gave Passy medication to control the bleeding when it comes and iron to build up her blood and promised to visit again soon.
Our next patient was Agnes. Agnes is 50 and has cancer of the lung. This is an unusual diagnosis for us. We don't see it often. Agnes's biggest problem is coughing and difficulty breathing. Since starting morphine two weeks ago she has seen some improvement and is now able to sleep but we increased her dose hoping to get better control of the cough.
Our last patient was Angela. Angela is only 25, a mother of 2, who had a mastectomy in 2009 for cancer of the breast. She received no further treatment and when we met her last year she had already developed metastases to her liver. We lost touch for a while when she went back to her husband and children in Kampala but now she is home with her parents. She was so happy to see us.Â She had gone to the office earlier in the day and missed us. Her main problem is ascites. This is a fluid build-up in the abdominal cavity that is most uncomfortable. She couldn't eat because of the pressure on her stomach.
Over the years we have had many patients like this and we have become quite adept at paracentesis. That is removing the fluid with an I.V. catheter. We removed ten litres of fluid from Angela's abdomen and it made such a difference. She was so grateful. We also started her on medication to hopefully cut down on the production of the fluid and promised to visit soon. If she is like our other patients, we will be doing this every month until she dies. We left Angela grateful that we could give her some measure of comfort but so sad to see this very young woman so sick. She is our youngest patient with breast cancer and it just teaches us that it is never too soon to start self-breast exam.
We arrived back at the office at 6 pm, happy to be home and satisfied that we had done a worthwhile day's work.
Despite good intentions, this diary is very long in being up-dated. Our year in Mobile started with our usual planning week but even as we were planning for the year we were receiving new patients and caring for old ones. One man in particular stands out in our minds. Simeon was referred to us the first week in December. He was 90 years old and had advanced cancer of the prostate.
On our first visit to the home we met a very distressed patient and family. We were really challenged, as he had total obstruction from extension of the tumour. We racked our brains and came up with possible treatment. As it was a Friday, we promised to come back on Monday morning and we all went home to add our prayers to the treatment. Monday morning we entered the house with baited breath only to find Simeon sitting up and smiling. The problem had been resolved and he was now comfortable and able to converse with us. Such an interesting man.
Over the following weeks, he continued to respond well to treatment and was able to celebrate Christmas with his family and friends. His daughter came to the office during Christmas week for a medicine refill and told me that the only problem now was that he was waking in the night hearing someone call his name. We talked about this and decided that perhaps he was hearing a call to move on. They were a very committed Christian family and very ready for death. Early on, I had encouraged his daughter to call her siblings to say good-bye and in early January a daughter came from the UK to visit.
They had a very pleasant visit and as she was about to return home, Simeon said he had 5 days remaining. We didn't take this too seriously but his daughter changed her ticket just in case and, lo and behold, on the fifth day, Simeon died peacefully. It was really a very satisfying case for us as a team. We had all been involved caring for Simeon and talking to the family. He went so peacefully and the family was so grateful, it was very affirming. His daughter came to see us afterwards and told us how friends had come to visit and said that he should be in hospital or on I.V.s , but she said no, he wanted to be at home and he was ready to go. This is really an accomplishment here as culture demands that 'everything' must be done to keep someone alive and in many cases it ends up prolonging suffering rather than prolonging life.
On an entirely different note, those of you who have followed this diary over the last year may remember Deborah. Deborah was a young girl with osteomyelitis who was referred to us last July. We arranged for her to have surgery and she made a very good recovery. However, she has multiple deformities as well and we were considering more surgery for her but have decided that perhaps this can wait. Instead, we have enrolled Deborah in school! This is a small school out in a nearby village that was founded for children with special needs. The woman who started it had two children of her own with disabilities and saw the need for a special school for them. As Deborah is 13 now and has never attended school this is a very exciting step for her. She was taken last week with her wheelchair and all her requirements. I am sure that she never had so many possessions in her whole life. Granny went along to see where she will be staying and both she and Deborah were delighted. We have no pictures to show you but we will get some soon so you can watch Deborah's progress.
This is all for this month. I close with a very heartfelt "thank you" to all who have supported our work in every way.
We started the year 2009 with 74 active patients and in the first 6 months 120 new patients were registered. Among them were 11 children, which is a new experience for the programme. Seven of the children presented with Burkitt's lymphoma, 3 with osteosarcoma, and 1 with hepatocellular carcinoma. Caring for children is always challenging because of the emotions evoked, both by the suffering child and the suffering parents.
Kato and Noelene were both referred to us from Kitovu Hospital with osteosarcoma. Both were 13 years of age. Initially, Kato's family refused amputation and we cared for him at home. The tumour increased in size and the child was totally bedbound. Yet the family insisted that amputation was not necessary and he would get better. Kato cried for amputation because his leg was so heavy and the tumour broke down and became offensive. Finally, after many weeks the family agreed and we brought him back to the hospital for amputation. The very same week, Noelene was admitted with a tumor almost exactly the same as Kato. Noelene was an orphan being cared for by an aunt and uncle and they accepted amputation immediately. Both children did well after surgery. Both received crutches and were soon "flying" around the ward, so delighted to beÂ mobile once again.
We were aware that with both children the disease had already advanced and that their improvement was only temporary but at least they had this period of comfort and enjoyment. Both children went home and we continued to follow them. Kato's guardian was anxious to return to Kampala as was Kato himself so soon they were off to the city with a referral to Hospice Uganda for follow-up.
Noelene's time of comfort was very limited. Before long, she was back in Kitovu with a tumour in her jaw, a metastasis from the original tumour. We were able to control her pain with morphine and she was able to take fluids with a straw. She went home comfortable but within 2 weeks her aunt phoned to say that she had died.
Kato's recovery was not much longer. The very day that the palliative care team went to Hospice for a seminar we were told that Kato had died the night before.
Taking care of these beautiful children was heartbreaking, yet we had the consolation that at least they were pain free and had died in the caring comfort of their families.
Some of you are already familiar with Kato from a previous letter. Although we knew his death was inevitable, it pained us to know that he really had so little time back in Kampala.
Of the 109 new adult cases, 25 had HIV/AIDS with Kaposi's sarcoma (KS) as the main complaint. The patients with KS are often referred to us for chemotherapy and when the disease is confined to the mucous membranes of the mouth or is in an early form, the chemo is very often very helpful, especially if the patient has been started on antiretroviral therapy. As with the other cancer patients, many come to us with very advanced disease. This year we were able to purchase a number of pairs of crutches and these are of great benefit to those patients who have involvement of both legs.
One KS patient who came to us was J.B. He is 20 years old. Both parents died from AIDS and it is possible that J.B. contracted the virus at birth from his mother. When we first went to visit him, he was living on his own in a house about to fall down, as you can see in the picture on the left.
With your help, we were able to build a very simple house for J.B., pictured below, with just 2 rooms. You will notice that we have included a water tank because one of his biggest problems is fetching water. Now we just have to pray that the rains come when expected. He will also be getting a pair of the crutches to help him mobilize.
Eighty-one of the patients were suffering from cancer and 2 had cirrhosis of the liver. Interestingly, the most common cancer seen in these six months was cancer of the oesophagus, with 14 patients. These patients are usually men and come to us at very late stages of their disease. It is a real challenge to care for them. Fortunately, with "strong" morphine, i.e. 50 mg/5 mls, we are able to control their pain even if they are unable to swallow because the morphine is absorbed through the mucous membranes of the mouth. Some come to us already having had gastrostomy tubes inserted and these patients do very well because they can continue feeding via the tube. Cancer of the breast and cervix were the most common among women: 13 of each type. We continue to send some for palliative radiotherapy and chemotherapy but usually they come to us much too late.
Fortunate was a 43 year-old woman who had been cared for by Kitovu Mobile since 1993 when she tested positive for HIV. She had 3 children and at that time the youngest was 5. In 2005 Fortunate was diagnosed with cancer of the cervix. She was treated with radiotherapy and did very well but early this year she presented with pain and other symptoms. The cancer had come back with a vengeance. Palliative Care was called in and we were able to manage both her pain and other symptoms. Fortunate died some months later.
This is a case of really total care. Fortunate was supported by Kitovu Mobile for 16 years. Her children grew to adulthood and were independent at the time of her death. Just a week before she died, Fortunate was interviewed by a national radio programme that covers HIV/AIDS concerns. Her gratitude to the programme was immense and our pride in a job well done was just the same.
I don't think that pages of statistics will be of interest to you so we will close here, promising our grateful prayers for you and yours from the P.C. Team and from all those we care for.
One of our activities in Palliative Care is sensitizing the public about what we do and how to refer patients to us. Over the years we have worked with our own Mobile Community Workers, who number over 700. As a result we have had many patients referred who were suffering at home, not realizing that something could be done to give them some relief.
The Mobile Programme has been caring for people with HIV/AIDS for over 20 years, and because of this, people with HIV know where to come for help. It is a different story for people with cancer. Often a patient has known someone who had the same condition and nothing could be done, so the patient just gives up and suffers at home.
Or perhaps they go to a local clinic or drugstore and are actually told, "You have cancer. Nothing can be done." They too, return home to suffer in silence.
A third group may actually get to a larger health centre or hospital and be told that they have cancer and they must go to Kampala, the capital city, for treatment. Very few can even afford the transport to the city, not to mention the treatment so they also go home.
These 3 groups are those that we target by sensitizations. Once someone becomes aware of what help is available they can refer neighbours or family members to us for care.
For the last 2 years, we have been going to parishes in the Diocese where Mobile doesn't work, to sensitize church leaders. Again, they have referred many patients.
However, lay people often don't have a good understanding of disease and we do get referrals for conditions that are not really in need of palliative care. Most of these patients are reassured and referred onwards.
There are some, though, that we cannot walk away from. Deborah is a case in point. Deborah was referred by a neighbor who heard one of our talks. She is 12 years old and has chronic osteomyelitis, an infection in the bone. She has lived with her grandmother since she was a baby and her leg became infected before she learned to walk. So Deborah has been seated on the ground all her life with a painful, malodorous wound. Her mother abandoned her as a baby and her father was a soldier who went off to war and never came back.
Fortunately, the very week that we first met Deborah, we read in the paper of a new hospital in Kampala that was dedicated to treating children with her problem. Although there is some cost, it is minimal compared to what it would be at the Government Hospital. Off we went with Deborah and Granny.
Needless to say, Deborah was fascinated. She had never been out of her own yard. The doctors agreed to take her case and while she was having the first operation, we had a wheelchair constructed for her. Deborah is now back at home, off the ground at last. The wound in her leg has healed and soon she will be going back for further surgery that, hopefully, will allow her to walk someday. We have a long way to go with Deborah, but at least the journey has begun.
This is not palliative care, but as I said, some cases you just cannot walk away from. Often we get donations from generous friends who say, â€œUse this for whoever needs it.â€ Because of donations like this, we have been able to start on Deborah's journey. Thank you!
This week we have been honouring International Palliative Care Week. For our Mobile Team it meant work as usual for the most part.
On Monday, we went out to see patients in their homes. Our first visit was to Noreen. Noreen is 13 years old and has osteosarcoma. We first met her in Kitovu Hospital where she had come to have her leg amputated. Amputation is always a very big decision for families here as it is everywhere, but Noreen was in such pain with the tumour in her leg that it was the only solution. She did very well after the surgery and when we gave her crutches she was soon flying around on them.
Although we knew that the disease had progressed beyond the leg we had great hopes that she would have some time with good quality of life. When we visited a month ago, this seemed to be the case. Noreen was out in the yard with the family and was quite comfortable. How sad we were when only a few weeks later she was brought back to Kitovu. The cancer had invaded the muscles of her jaw and she was now unable to open her mouth. Thank God that our morphine is in liquid form and she was able to take it for the pain.
When we went to her home on Monday, we didn't know what to expect. Noreen was in bed, very wasted. Her aunt said that she was no longer able to drink using a straw but that she could still manage the morphine and did not complain of pain. It was obvious that her aunt was caring for her with great love and compassion. We checked her meds and prayed with her before leaving. Noreen died just 2 days later.
Our next visit was to Alice, a woman of 42 who has been a Kitovu Mobile client since she tested positive for HIV in 1993.
At that time her children were small; the youngest only 5. For all these years Mobile Care has been her mainstay. Now she is dying of cancer of the cervix and our Mobile Team continues to be there for her. We are so fortunate to be able to offer palliative care to our patients. After her long struggle with HIV, at least she will die in comfort and with dignity.
We visited 3 more patients that day and came home in the evening tired but satisfied that we had brought comfort and support to these patients and their families.
On Wednesdays we usually go out to see patients but because of the occasion this week, the Team went to Kampala, combining a little business with pleasure, collecting morphine from the Medical Stores, and then having a nice lunch before going to Hospice Uganda for an afternoon on Spirituality in Palliative Care. It was a good day.
On Thursday, we were visited by the presenter of a national radio programme who came to interview us and some of our patients. We are always pleased to have the opportunity to speak out about palliative care even though we know that it will probably mean more work! At present we have 110 active patients on the programme.
Friday was home visiting again, with one very interesting case. I think I will leave that for another instalment of our Palliative Care Diary!
A big "thank you" to all who help us to carry out this much-needed work. God bless you!