Palliative Care – 10 other aspects
(All the articles published in past are available at www.shyamhemoncclinic.com/blog/)
Question: Last time we covered few more aspects of palliative care i.e. common concerns raised by patients or family members.1. End of life care is part of palliative care. Palliative care however starts from diagnosis of cancer itself. 2. To keep patients at home, as far as possible, in last few days to months. Use home care services (formal or informal i.e. family doctor or nearby nursing home’s staff coming to home as needed) to reduce need for hospitalization for symptomatic care. And to reduce cost substantially. 3. In general, it is better to disclose diagnosis and prognosis to the patient. It is best done by family members. However, if they are uncomfortable doing this, doctor or counsellor can do this. Advantages of informing patient about prognosis. 4. We spoke about what happens in last few hours to days. And importance of being prepared, what do we mean by preparation. To avoid emergency hospitalization for a severe end of life event.
There were some other concerns raised by patients or family members related to palliative care, more as part of end of life care. If patient has very low intake, how will they maintain strength? Should they be given IV fluids or nasogastric tube feeding in such cases? Should oxygen be kept ready at home? Should the patient be kept in hospital for better care in last few weeks or days of life?
Ans: Yes. These are all important questions as well. And many doctors also need guidance on these issues. Question related to hospitalization for end of life care was answered last time. However if family cannot manage at home, for whatever reasons, then better choice is to keep patient in a palliative care center, also known as Hospice center. This choice is far better than hospitalization. Such centers are well aware of scientific principles and concepts of palliative care. Hence they provide better comfort to patient and family members, reduce cost to a much greater extent (most of them are free of cost), and avoid painful interventions.
1. What to do if oral intake is very low?
This is a very common occurrence in last few weeks or days for most patients. Family is very concerned generally about this aspect. And they think that patient is getting weaker due to low oral intake. Correcting this somehow will improve strength markedly. Hence they try to force feed patient or ask us for IV fluids or even a feeding tube. Many doctors also think this is necessary. However it has been clarified to a great extent in palliative care principles that force feeding or IV fluids rarely work at such times. Our own experience at Karunalay palliative care center has also been the same. We have had patients who are taking only 1-2 glasses of milk or even water alone in last few days to weeks of life. Force feeding will only lead to symptoms like nausea, vomiting, diarrhea, bloating, abdominal pain. Similarly extra IV fluids also do not improve strength for most patients, and may lead to edema, electrolyte disturbances (for example severe low sodium from SIADH). Additionally, venous access is difficult in many such patients. Patients may require multiple punctures to access a vein, phlebitis also can be very painful and substantially reduce quality of life. People with obstruction of upper GI tract, intestine or stomach may need IV fluids however.
A number of patients have “dryness of mouth”. This is frequently treated as sign of dehydration. Patients drink a lot of liquids, some get IV fluids too. However this dryness of mouth in most cases, is not a sign of dehydration. Most such patients do not need more fluids, but other measures. Such as sucking on ice chips, sugar candy (commonly known as “peppermint” in Gujarati colloquial language. Ones that come in different colors and flavors, more in use by children.). Small ice chips are very useful. They provide much longer relief in dryness of mouth compared to drinking water.
So in general, it is best to accept that low oral intake is part of disease process. Body physiology is such that now need for food, calories, water is much much lower. A certain weight loss is also part of this process. And in most cases it can not be improved by any measures.
It has been thought that feeding is a form of nurturing (caring for patient). Hence relatives are unable to give up the activity of feeding. And in some or other way, they keep telling patient to eat. Experts suggest that relatives should take up other forms of nurturing at this time, rather than feeding. For example, light massage on head or arms or legs, singing or reading books newspapers, playing games of their choice …
2. Should oxygen be kept ready at home?
Whenever a patient has difficulty breathing, most people think oxygen is required. Research shows that large majority of patients in such stage do not need oxygen. Their oxygen saturation is adequate. It is either normal or somewhat below normal, such as up to about 85% or even lower. At rest, for most such patients, this is sufficient. And that their breathing difficulty does not improve by supplementing oxygen and improving it to above 90-95%.- Most of the time, this breathing difficulty is related to mechanical factors, such as tumor compression, fluid collection. Sometimes patients are breathing fast due to pain, anxiety. Hence most patients do not need oxygen, Morphine in fact is the drug best suited to improve this mechanical reason of shortness of breath. This in fact was one of the questions in our oncology examination. And the answer there was to give morphine, rather than oxygen. Some patients may have extreme breathing difficulty in last few hours of life. They may need sedation. Again oxygen will generally not help. We discussed this last time as well.
August 15, 2021 Dr Chirag A. Shah; M.D. Oncology/Hematology (USA), 9998084001. Diplomate American Board of Oncology and Hematology. Ahmedabad. email@example.com