Recently, we asked IAHPC Board Members to address one topic. The subject for our most senior members was: ‘What I know now that I wished I knew when I started out in palliative care.’ Look for their contributions in a future issue. In this issue we are running the first installment of responses from our other Board Members, whose subject was: ‘What I learned this past year that helped transform me professionally.’
By Lukas Radbruch
What did I learn this past year that helped transform me professionally? Seems like a simple question, but I did have to think a bit about it. And I did not find any special event, any overwhelming experience with a special patient, no outstanding moment where something snapped and I suddenly had a revelation.
However, there are one or two ideas that have become particularly important for me in the last year, even though they had been lurking in the back of my mind for some time now.
I have been and still am involved in a lot of guideline work in the last months and years. The German Association for Palliative Medicine is currently developing the second part of its evidence-based guidelines, there are new legislation and regulations on advance care planning in nursing homes, and we are constantly working on our own set of guidelines and standardized operation procedures in the two palliative care departments that I am heading.
In all these guidelines, it is clear that patients should be offered all the information, so that they can make clear decisions: when to switch from curative to palliative care, when to stop futile interventions, when to agree to DNR/DNI orders (do not resuscitate, do not intubate).
But how often do we talk to patients who do not want to decide? I have an ongoing discussion with some of my colleagues about whether we have to discuss the DNR/DNI code with patients newly admitted to the palliative care unit immediately on the day of admission.
They say they need this information if, for example, there is a crisis that night and they are on duty, so that they know how to comply with the patient’s wishes and preferences. I do not think that patients are able to make such a decision on the day of admission, talking to a doctor they have never seen before. This kind of discussion needs some time and a lot of trust between the patient and health care professional, doesn’t it? So I would want to have an open ear if patients want to talk about this, but would broach the topic only when a few days have passed and we have developed some kind of relationship.
Thinking (and talking) about this also makes me think: do we really realize what kind of decisions we are expecting from our patients? That we want them to acknowledge that dying is imminent? That we want them to forfeit all hope (however unrealistic) that they will be granted some last-minute postponement of death? That we want them to face death boldly? And isn’t that a lot to expect?
It seems to me that many patients prefer to keep some ambivalence. The first patient in our new palliative care unit did not feel well enough to start her third-line chemotherapy. However, even though it was pretty clear that this chemotherapy was not really going to help, she did not cancel it, but postponed the decision for more than four weeks, and then decided to give it a try, in spite of all the advice she had received against it.
If we talk about the need to make decisions, especially on treatment withdrawal or discontinuation, who is having this need? I think in most cases it is the health care professionals who want to have that decision, and not the patients. Patients may feel the need to stay ambivalent, and may not want to close that door with a final decision. It may require some time, and fostering a good and trustful relationship, before they can make such a decision.
So, what is more important? Is it our need for clear decisions and clear guidance, or the patients‘ need for ambivalence? With all the discussions on guidelines, checklists, and outcome criteria, I am trying to give feedback to my team that we have to bear with the uncertainty, the ambivalence, and the reluctance of patients and caregivers to come to a final decision.
By Esther Munyoro
Editor’s note: The names have been changed to protect patient privacy.
The definition of palliative care talks about improving quality of life (QOL), but leaves each one of us to figure out how to measure or assess it. In 1984, K.C. Calman put forth the hypothesis that quality of life measures the difference between where a patient or caregiver finds themselves, and their hopes and expectations. He called it ‘the gap.’
In the last year I have learned to ask patients and their caregivers to tell me about their gap. This has pushed me into the psychosocial and spiritual arena, a space I do not feel adequately prepared to address.
One example is Moses, a 75-year-old farmer who brought his 65-year-old wife Sarah for a review. Sarah was being treated for cancer of the cervix, treatments that left her fatigued and not interested in most of the things they ordinarily did as a couple. Imagine my surprise when I asked them about their problem and they both said it was their inability to have sex. Nothing seemed to work for them and a terrible smell and discharge stayed with them at all times. Moses confessed that he had thought of having an affair, at which Sarah burst out crying and threatened to commit suicide. I looked at my prescription pad, ready to write something to make it right, but nothing came to mind.
The next couple was Peter and Maria. Peter had been treated at his local hospital for cancer of the prostate. An orchiectomy (surgical removal of both testicles) was done, which left him better off from the disease but a total disappointment to his wife. He felt I needed to explain to his wife what had happened and somehow also help them as a couple because sex and intimacy was a major problem.
After Peter and Maria came a young lady with cancer of the cervix. For her, the guilt she felt for having had an affair with her brother-in-law long ago was making her unable to get better. She asked if I could I help her achieve forgiveness: first from God and, secondly, from her sister. She knew a cure was possible, but felt that it needed her sister’s forgiveness for God to allow it. To complicate matters further, her sister was funding her treatment. I wondered, will God only forgive her if her sister is involved? We agreed to meet at a later date, so that I could speak to a religious counselor and work on the pros and cons of confessing to her sister at this stage of her treatment.
To help with ‘writing’ the sex prescription, we recently invited a clinical sexologist to talk to the palliative care team about matters involving sex and intimacy. The information received was valuable and we appreciated a greater understanding of the gaps in the holistic care we give. Now I am better able to craft ‘prescriptions’ for the couples above.
By Mhoira Leng
Each patient or family interaction, each teaching and learning moment, each opportunity to empower policy and integration helps in the ongoing process of transformation that is at the heart of palliative care...for those we partner in care, those we train, for systems and communities, and of course one’s self.
This year I have visited two significant humanitarian refugee areas: Adjumani, Northern Uganda, where the host population is outnumbered by refugees fleeing the traumas in South Sudan; and Gaza. A refugee settlement is essentially an open prison for its inhabitants, and one of the most chronic, difficult to solve, and inhumane refugee settings. In both places, I have been humbled by the people I met. They are willing to share the deep traumas of life, show sacrificial hospitality, welcome holistic support, show compassion, and are eager to learn how to relieve suffering, emphasizing their sense of value and innate humanity.
I have asked people I meet what palliative care means to them. Medical students in Gaza said ’dignity, hope, love, never nothing we can do, caring for one’s self, and compassion.’ Helen, a refugee in Adjumani, said, ‘It means God loves me. That's why these people like my sister and brother are coming to visit me and this encourages me a lot. I give thanks to the Lord and God bless all of you.’ A humanitarian doctor said, ‘We appreciate your initiative, it has been a key lacking point. Many times there is a patient crying in pain. The approach of integrating palliative care into the medical practices of prevention and cure is the way to go. The more people we train, the more people we will reach in community.’
This fundamental right to dignity and hope for all was summed up by a senior nurse in an Adjumani hospital: ‘Someone needs to speak for the voiceless. When help comes, people change. It is like losing hope — then hope appears suddenly like the sun.’