Family as Stakeholder

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder?

Each of these terms comes with assumptions about the family’s role in the healthcare setting.

If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice.

You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder? Each of these terms comes with assumptions about the family’s role in the healthcare setting. If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice. You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.

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