Respecting patient autonomy and religious beliefs in end-of-life care

Ethics in Long-Term Care Administration

When it comes to offering options to competent adults who are able to make their own health care decisions, there are several things to consider. The main consideration is that these people are indeed adults, and what they decide for themselves should be honored when it comes to long-term care (LTC) decisions (Amaradio, 1998; Costa-Font & Patxot, 2005). In this case, the woman coming to the LTC facility was presented with all the facts of her case, and she clearly understood that she could (and most likely would) die if she did not have a lifesaving blood transfusion.

However, her religious beliefs did not support getting a transfusion, and her family supported her in this belief. The first question here is whether it is ethical to speak to this woman in private, without her family present, and offer her a transfusion in secret that others would not be told about. It would save her life and her family would not have to know she had it, but the argument could be made that it would also be encouraging her to engage in what she would consider sinful behavior.

The Secret Transfusion Question

Whether the LTC facility shares her religious views or not, the facts are that she will most likely die without the transfusion, and that she holds beliefs which prohibit her for receiving that transfusion. This is something she accepted as a "rule" when she chose this religion. Whether she has considered the validity of her religion and its guidelines is not for the staff of the LTC to question or discuss. The staff of the LTC facility is charged with the duty of taking care of the patient, and keeping that patient as comfortable and healthy as possible while still respecting that patient's beliefs (O'Brien & Elias, 2004; Stone & Benson, 2012). While this is not easy to do, it is highly important.

Religion is something very personal to the individual, and the beliefs that are held by that individual are often not negotiable. They are a part of their faith, and they are not easily changeable just because someone could die. Those who are religious and believe in life after death believe that death is not the end, so there is no reason to insist that death is something to avoid or stop at all costs. If the woman did not understand the gravity of her actions it would make sense to discuss it with her, but she is well aware of what could happen and is not willing to go against her religious beliefs in order to remain living. She is very dedicated to what she believes to be correct in honoring God. Because of that, it is not ethical to offer her a secret transfusion and not tell anyone.

If she wants to have the transfusion and wants to keep it a secret from her family, she can (and should) approach the staff about doing that. Her family will not always be next to her, and she can request a private discussion with her doctor if she feels the need to do so. In that sense, it is best to allow her to make her own decisions and approach the staff if there is something she wants to do regarding her care. Offering her a secret transfusion would be discounting her religious beliefs and saying they are not important. It would also be asking her to ignore beliefs that are very important to her in order to save her own life. Many people will do that when they are faced with death or a very serious disability, but that does not mean it is ethical to ask them to do so.

It is generally something that is arrived at on one's own, instead. To many religious people, death is not the end and is not something to fear. It is natural, and the woman may feel that God wants to take her home to Him, which she could accept as just being part of the way God works. To attempt to negate that by hiding a transfusion so no one would know would not work, because the woman (and God) would still know. Some people would not see that as an issue, but others would feel too uncomfortable and even too guilty to focus on enjoying the life they were given through the transfusion.

Asking the Family to Change its Mind

For many of the same reasons, it would not be ethical to meet with the family and try to change their minds. That would be done with the assumption that they would then talk to the patient and try to change her mind about getting the transfusion so that she could live longer and/or avoid the permanent debilitating condition that refusing the transfusion would likely cause her. The idea that these family members would not want to lose the woman makes logical and emotional sense. They care for her, and they would want her to live longer and remain with them so they could all enjoy one another's company.

However, when religious beliefs are very strong, they can definitely override what would seem "logical" from the perspective of most people who want to live a long life here on the Earth. Putting someone in a LTC facility is generally done with the assumption that they will remain living but will need help with daily life for a long time (Costa-Font & Patxot, 2005). That implies that the person going into the facility is expected to remain alive, and that he or she wants to do so.

When it comes to the patient in the case study, whether or not she remains living is very questionable, especially with the seriousness of her condition. One would have to question why she is coming to a LTC facility if there is not an assumption that she will remain alive. Despite that, there are many reasons why she could be there, and one of them is that her prognosis, with or without the transfusion, is not completely set in stone. She could improve even without the transfusion, or she could die even if she has it. That is likely the reason she has been moved to the facility, which has nothing to do with her religious beliefs or the beliefs of her family regarding her health care.

A LTC facility must be careful that it does not attempt to influence people or make them feel that their beliefs and opinions are incorrect or do not have validity (Lewin Group, 2010; Mulvey & Li, 2002). By working with the family in an effort to get them to change their minds, the LTC facility is negating the beliefs of that family and indicating that they do not feel the family can make the "right" decision. Doing that can alienate the family and the patient very strongly, and can even cause them to leave the LTC facility and move to another one in order to avoid what they perceive as ridicule of their religious beliefs (Stone & Benson, 2012). That could stop the patient from getting the best care no matter what he or she chooses (Stone & Benson, 2012).

However, if the LTC facility does decide to meet with the family and try to change their minds, the focus should remain on the patient. In other words, talking down to them or attempting to negate their religious beliefs is generally never a good choice. It can make people defensive, and can also indicate that the LTC facility is not taking the people and their wishes seriously. The family may also feel as though it is wrong to attempt to talk them into changing their minds, so that they will try to change the mind of the patient. Instead of focusing on what the family may be doing "wrong," it is much better to focus on how the patient's life can be save and what can be done in order to help her.

If there are religious leaders or elders in the patient's religion who can be brought in to talk with the family, that can also help the LTC facility "make their case" without demeaning the patient or the family at all, or making the family feel as though their beliefs are being negated. While this may not change the mind of the patient or the patient's family, it could help everyone, including the staff of the LTC facility, feel better about the choice the patient is making and gain a better understanding of that choice.

Conclusion -- Legal Facts to Address

There are several legal facts to consider when it comes to LTC facilities and issues such as withholding lifesaving treatments in the face of religious beliefs. First of all, children and wards of the state are not adults. While they should still be respected because they are human beings, decisions have to be made for them. That is true when it comes to healthcare, especially, because children may not really be prepared to make the "right" decisions regarding their own care. That can be true of wards of the state, as well, and the state at that point will have to step in and make a decision about the care of that person. For children, even a parent's religious beliefs are not enough to withhold a treatment like a needed transfusion. The state can force the transfusion, even if the parents do not agree.

It is also important to be aware of the fact that LTC facilities are designed to take care of people for a long period of time. That is what they expect to do, and what they are for. People who come to them and then willfully choose not to consider lifesaving treatment may be difficult to work with, because there is little the LTC facility can do for them other than palliative care. It is not legal for the facility to force treatment on an adult who does not want that treatment, so anyone who comes into the facility (and their families) should be very careful to work with the LTC staff regarding religious beliefs and related issues. That can help ensure that legal issues are clearly understood, so mistakes are not made and LTC staff does not make choices for a patient that are not acceptable.