The other day, I had a family tell me to not tell their grandmother that she had cancer and was going to die soon. I am not sure what to do. I want to be culturally respectful but I also have to make sure that I am doing right by the patient. It is her life, not the families. What should I do?
Great question. If it was 40 years ago, a doctor could keep information from a patient. Now the rules are different. Here is what you need to do to respect the patient and the culture.
1. Speak directly to the grandmother, hopefully without her family in the room. Ask her, “Do you want the results from the tests we are doing or should I be talking to somebody else? Do you want to make your own decisions or would you prefer that someone else make those decisions for you?”
2. If she says, “Yes, I want to know the results and make my own decisions”, then you will know what to do. Tell her the information. You may also want to check with her if she would prefer to have these conversations in private or with her family present. Sometimes it is just as important to the patient to protect their loved ones as well. Respect the patient’s wishes while you show respect for this family’s culture.
If she says, “No, I would rather focus on getting better and let someone else deal with all of the decisions”, you also know what to do. You now must ask her, “Who should I talk to?” Once she tells you who is in charge, and it might be a 2-3 people, then talk to them. This is called a waiver of informed consent. Patients can act autonomously and waive their right to information. You may want to have her to fill out an advance directive or living will ahead of time and check the box on the form that says, “Starting now, I want _____ to make my decisions for me even though I still have capacity.” If she changes her mind later on, then you can follow her new instructions and begin having her give her own informed consent.
Have a kind and respectful day.
How do I get my husband into hospice? He has cancer which has spread everywhere and his pain is not being managed. I have heard about hospice but I don’t know who to call. What can I do?
I am so glad you asked. To get a patient on hospice, a doctor has to make the referral to the local medical hospice. You have to ask your husband’s doctor, and it could be any of his doctors, to call hospice and set it up. Some doctors are not willing to put their patient on hospice because they don’t want to give up trying to save your loved one. So if your husband’s doctor won’t put him on hospice, ask another doctor you know. An ER doctor can also put someone on hospice.
After the doctor calls hospice, the hospice representative will call you later that day or the next morning. A social worker and a nurse will both be coming out to see your husband within 24 hours. They will evaluate what needs your husband has and what your family may need. If your husband qualifies for hospice, you will start receiving visits from other hospice staff, deliveries of medical supplies such as hospital beds, oxygen or bedside commodes. You will also be receiving medications to have available to take care of his pain and other symptoms. And the good news is that none of this will cost you anything.
The nurse will teach you about the new medicines and there is a 24 hour hotline you can call if his symptoms change and you need help. Every patient is different. What your husband will need may be very different that what my Dad needed. The good thing about hospice is that as patient’s health needs change, they can adapt the plan and continue to provide comfort for your loved one.
It may be overwhelming for the first few days as so many caregivers will be coming and going as they make sure your husband is well taken care of. Unfortunately, you do lose some privacy which takes some time to get used to. Don’t worry though, after a while you will get to know the hospice team and they will become your trusted friends. Most people find hospice to be a huge comfort to them as they can know that their loved one won’t be suffering.
Got a question? Ask Viki.