Role of patient in Decision Making
in Cancer Treatment
For patients and caregivers, decision making in cancer treatment is sometimes a difficult task, while in most cases, it is actually simple. It is important to realize that as a patient or caregiver, you have an important role to play. Your tasks in decision making could be:
- To say yes for a proposed treatment, after understanding
- To decide one option between two or many options,
- To make a choice between no treatment versus some treatment
- To decide between one type of operation versus another
- To decide for a difficult procedure such as bone marrow transplantation,
- To decide for a costly and newer drug and so on.
Here is the problem. You may say ‘that is not fair’ or ‘How can that be’ or “What do I know” to decide and “doctor knows everything about me and the cancer” so he should decide for me and so on. While all of these appear logical, let us not forget that it is you who is to get the impact of decision, good or bad. For example, a lady with breast cancer has an option of the complete breast removal or only part of it. You do not let some other person to choose your dress and how can you let someone else to make a choice of preserving the breast or not? When it is to do with your body image, how can you let your doctor decide for you? You need to understand the risks and benefits of keeping the breast or removing it and make a decision. You can always ask questions and get your answers before you come to a decision. Similarly there will be a costly treatment which you may think as a miracle and in reality it may not be. There will be many situations when the patient or caregiver after carefully understanding pros and cons has to participate in decision making. For example, you may have to decide between two types of treatment.
One of the important requirement prior to decision making is to ‘get correct information’. Similar to a situation buying a new car or refrigerator, when you do a research and then decide the brand, size, colour, model etc. And ‘Million-dollar question’ is where do you get the ‘authentic’ information from? Sources are (a) your consultant, (b) a good second opinion (s) or (c) doctors in your family (d) authentic website on cancer such as national cancer institutes of western countries, or disease specific patient resources or foundations (myeloma, lymphoma, lung cancer, breast cancer etc) (e) patients who have undergone the similar experience, (e) websites with drug details. (Please do not be misled by the websites that can misguide you). (f) Literature available at oncology centers. Sometimes before a decision, you may like to think about it and come to conclusion taking time, as long as you do not compromise the cancer. This is quite fine and you don’t have to take a spot decision unless there is a real emergency.
Patients use what are known as “decision aids” to get options about their conditions to make easy decisions. Decision aids—pamphlets, videos or websites—that include treatment options with the possible benefits and harms can help patients become more knowledgeable and better prepared to participate with their healthcare providers in the decision-making process. Patients should be wary of where they get the health information from. Random searches on internet can pull up websites that may give more alternative and holistic advice that’s not backed by current science.
One of the tasks you must do is request your oncologist for a tumour board discussion. Tumour board means – treatment team consisting of the medical Oncologist , Surgical Oncology Team and the Radiation Oncologist, pathologist, radiologist meet together and discuss your details to suggest the options and the appropriate decision. Also you must mention clearly your financial status to your oncologist to suggest suitable option for you. The different option for cancer treatment are decided in a particular patient depending on socio- economic status, functional status of the patient and social responsibilities.
Decision Making is involved at several steps:
- Curative or Palliative Treatment
- Treatment in hospital
- Treatment or Care at home
- Follow up
- Recurrence or prolonged Treatment
- End of treatment
- End of Life Care
- Diagnosis :
- Revealing complete diagnosis to patient and family is most difficult and is always done with care and there is always a question how much patient should know ? . Gradually patient has all the right to know everything as it involves planning of left goals and social responsibilities.
- Curative or Palliative Treatment ?
- Depends on stage at which patient presents and hence decision is more a scientific decision but also involves the caregiver as whole support is provided by them.
- Treatment in Hospital:
- All the events that take place during hospital stay are regularly informed and decision are taken with multiple family meetings.
- Care at home:
- Home care whether in a post treatment sitting or Palliative sitting is provided by the family and small things should not bother them , patient relatives should always be in contact with oncologist for identifying suitable intervention required or not.
- Follow up:
- Proper follow up protocol to be followed and any untoward incident and disease progress needs to be addressed by joint decision making.
- Recurrence and Prolonged Treatment :
- Regular follow up leads to early detection of recurrence and sometimes repeated intervention from part of treatment. Prolonged treatment usually makes the person emotionally drained along with the family hence decision making is always difficult. But repeated counseling and reassurance leads to be good decision in favour of patient.
- End of Treatment :
- Biggest dilemma is when to stop treatment as at any stage of disease some form of treatment is available but it is always the caregiver prerogative to decide till when to continue.
- End of Life Care:
- When the patient is almost is exhausted with supportive treatment also then end of life care is a tough decision but family has the utmost right when to stop.
- Financial Issues:
Since in private corporate hospital, the health care is expensive, it is very important for patient and caregiver to understand the available options with cost of each options. This will help them to decide, depending upon their available budget. Most important for them to cost vs benefit rate.
It is advisable for the patient and care giver to list all the options and cost. Thereafter the benefit of each option to understand the cost vs benefit ratio. For example, a very expensive treatment (say 5 times more ) may give them a possible benefit of quality of life and marginal quantity of life. This needs to be discussed with the family to come to a decision. Sometimes inclusion of a costly drug (such as rituximab) may give a probable increase in cure rate by 25-30%, it may be worth understanding the benefit.
There are many organizations, NGO’s who provide financial help to the needy patients. The details can be checked with the respective agencies.
Decision Making Algorithm for Cancer Patients
|· Your participation in decision making is mandatory.|
· Do not consider yourself ignorant but understand the pros and cons of all options.
· Consider the cost vs benefit, hidden costs.
· Understand the treatment plan in totality and clarify all the doubts.