Palliative care – 9 – 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. 1. Palliative care starts from diagnosis of cancer, including symptom relief such as pain, psychological support etc. End of life care, is part of palliative care, for those who are in last stages of cancer and have failed all standard cancer therapies. 2. Good palliative care given from diagnosis improves not only quality of life, but also Overall Survival. Means actually makes patients live longer as well. It also reduces futile efforts in last few months of life, such as ICU admissions, use of ventilator, procedures, and overall cost as well. 3. Palliative care, most of the times free of cost, is available in most cities now and in most cancer centers. 4. Home care services are an important part of end of life care. And they reduce burden on patient and family to a great extent.
Some common concerns are raised by patients or family members related to palliative care, more as part of end of life care. These include what to expect towards end of life? Will there be suffering? Should the patient know prognosis that now they have only few weeks or months to live? How to manage symptoms in last few days or hours of life? 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: These are the most common questions asked by patient or family. Very important to address them. Let us understand first that now we are talking about END OF LIFE CARE. This is still a part of palliative care, but at a time when there are no ongoing or expected anti cancer therapies left. Below are some of the key points we discuss during such a consultation. My last patient yesterday in clinic was a similar one, a 65 year old lady with advance colon cancer with liver metastases with bile duct obstruction. Very poor appetite, mostly bed bound due to weakness, and jaundice. Jaundice did not resolve in spite of stent placement. Now family had accepted that cure or major treatment to prolong life is not possible, and had the same questions that you have pointed out. In their case, cost is not an issue. They can keep patient in hospital for a long time.
1. As far as possible, keep patient at home. Home is where patient is most comfortable in general. Family may have to stretch, especially difficult if all members have active jobs. This is where home care is most useful. Varying degrees of facility are available. One can keep a 24 hour staff with doctor visiting as required. Or calling home care staff for few hours a day or only SOS i.e. as required for symptoms. Same type of service can be worked out with patient’s family doctor or a nearby nursing home or hospital. This is better if patient knows doctor for a long time. Formal home care is not always required.
2. In general, it is better to disclose prognosis to patient. Most patients have a sense already by this time that they are not going to survive. By being open with them, they are able to ask questions and misinformation is avoided. For example, they may think that they have only few days to live when in fact they may have few months to live. Or they may be worried about what suffering will happen in last few days of life or cost issues. They may be concerned about what will happen to family after them, or spiritual concerns. By being open with them, they can ask questions, family can ask about last wishes. Gives time to patient for financial decisions, such as making a will or informing immediate family where they have kept resources. Not clarifying this in time can lead to a lot of anguish at last moment for the patient. Also may create serious family disputes, often lasting for years including legal battles, after death of patient. There are many forms of last wishes that need time to arrange and are better done when patient is still in reasonable health and fitness. For example, visiting a temple in a different state or city. Or getting son or daughter married. Or visiting relatives….
3. End of life is highly variable. Many patients don’t have any dramatic symptoms or suffering that most people fear. Some have marked difficulty breathing for last few hours or minutes, or a major bleeding, or lose consciousness or are disoriented or are just very uncomfortable but cannot explain. In most cases, it is not sudden. Family should keep a family doctor or home care doctor number ready. To call them for symptomatic care in such moments. An injection can be given by them to keep patient comfortable or other simple interventions. It is very important to avoid transfer to hospital emergency room at such time. Emergency room team is not aware of prognosis. Hence they will do all they can, to save life. This will frequently include painful interventions such as putting a central line, CPR, ventilator placement, tube in stomach, urinary catheter etc. None of these measures improve survival. Most such patients will ultimately die in ICU, without any family members by their side. Additionally, a huge cost will be incurred for last few days or weeks of life. All this could easily be prevented by being prepared. Preparing all family members for expected death, home care or family doctor visit in emergency. So many family members have come and thanked us after patient’s death, for guidance of this type. They are thankful for making last few weeks, days, hours comfortable for patient and family members, not causing additional suffering from medical interventions, letting family and patient be together, and saving a lot of cost as well. Such death also brings a better closure for family. They live with much less guilt, depression, and better acceptance of death in general.
July 15, 2021 Dr Chirag A. Shah; M.D. Oncology/Hematology (USA), 9998084001. Diplomate American Board of Oncology and Hematology. Ahmedabad. firstname.lastname@example.org