A doctor stopped me in the hall the other day and asked what he could do to comfort his brother whose son had just died. He told me that the son was only 25 and had died in a car accident. The doctor said that when he talked to his brother, all his brother had done was to scream and yell at him. He didn’t understand why his brother reacted that way when all he was trying to do was to help.
As I sat down, I could see this doctor’s grief and pain. He was suffering for both the death of his nephew and because he couldn’t find a way to be supportive of his brother. He didn’t understand that grief, especially the early stages of grief can show up in many different ways. His brother wasn’t angry at him, he was angry that his son was dead. But he was taking it out on those around him. That is normal.
Everyone is different in their grief. Some people cry. Others get silent. Some can’t eat while others can’t get out of bed. Any emotion is okay when someone is in grief. And the grief will change as time goes on. When my Dad died, at first I was very quiet and wanted to be left alone. Then I couldn’t stop crying and needed people’s support. And now, years later, it is still an ache deep in my heart.
So how can we help?
1. There are no magic words to make the person feel better. Just say, “I am sorry for your loss.” Now I know you want to make them feel better, but trying to find the perfect words won’t help, but listening does. Listening is very healing.
2. So your next step is to listen, truly listen. If they start talking about their grief, don’t jump in with your own story about the loss you suffered in the past. It is not about you. It is about being present with them and their suffering. I admit that listening is hard. But try to sit still, be quiet and give them this gift.
3. The other thing you can do is to “normalize” their grief. What does this mean? The grieving person would like to be reassured that what they are feeling is normal and to feel less alone with their sorrow. So if they say, “I am so angry at _______.” You can say, “It is normal to be angry. That is a part of the grief process.” Any emotion is normal. That is grief.
4. Don’t be surprised if they don’t want to talk about their loss. Sometimes people need a break from their grief and would just like to have a normal conversation with you. In some cultures and families, grief is a private matter so please respect this and continue to be a good friend.
5. Lastly, if you are a healthcare professional, is it okay to cry with your patient? Of course it is. Sharing a few tears with someone else is a sign of compassion and understanding. But do not cry so hard that the patient then has to comfort you.
Have a kind and respectful day.
I’m kind of confused because I don’t understand the difference between hospice care, palliative care and comfort care. Is there a difference between these and if so, why do each of the doctors say different things? What are they trying to tell me?
Great question. I think sometimes even doctors and nurses get confused by these different words to describe pain management and end-of-life care. The words do mean different things but many times they are used to describe the same thing, the support your loved one will get during the dying process. In practice, doctors may be saying the same things even though they are using different terms. Let me try to explain.
Let’s start with palliative care. This is the most misused term because it describes both pain management when you’re healthy and the support you receive during the dying process. Palliative care is the global word to describe all of the care that is related to relieving suffering. Let me say it in a different way. To palliate means to relieve or lessen without curing, to mitigate or to alleviate. So sometimes the patient may go to a palliative care specialist, even though they’re not dying, to help them get their pain under control or to alleviate their physical symptoms. They’re not dying, they are just asking for good pain management. It frustrates palliative care specialists when people think that all they do is take care of the dying. This isn’t true. They take care of the suffering of all patients. And one group of these patients happens to be the dying.
Hospice care is for people in the dying process. A patient can get palliative care without dying but you can’t get hospice without being a dying patient. There are also different kinds of hospices, both volunteer hospices and medical hospices. I volunteer at a volunteer hospice and we provide respite care and support for the patient and family. We are like a good friend who stops by to help out. A medical hospice will provide volunteers as well as visits from nurses, doctors, social workers, chaplains and nursing aids as well as providing the patient at no cost, symptom management medications, medical equipment and oxygen etc.
Hospice care can also be found in different locations. It doesn’t always happen in the patient’s home. It can also be found in an outpatient hospice, an inpatient designated bed in the hospital, in a skilled nursing facility, a board and care or assisted living facility. Your location shouldn’t determine your eligibility for hospice, although there are a few facilities who are not accredited to have hospice patients in their facility.
Now let’s talk about comfort care. This is a word that is most often used inside of a hospital. At some point, the doctor may come in and talk to the patient or the loved one about putting the patient on comfort care. Here is what they’re trying to say. They are saying that, at this point they have nothing else they can do to cure your loved one’s disease. But what they can offer you is to keep them comfortable and to help them have a good death. It may not mean that your loved one is dying immediately but that the aggressive treatments that they have been trying are not working to get them better. And now they want to focus on relieving the suffering and keeping your loved one comfortable. They are not abandoning the patient but they are changing the focus from curing to caring.
Now maybe you’re saying to yourself, isn’t the relieving of suffering like palliative care? Isn’t comfort care, palliative care? This is where it gets confusing again. Remember that palliative care is for both when someone is fighting their disease and when a person is in the dying process. In reality, the patient should be getting palliative care throughout their medical treatment experience. But sometimes palliative care is brought in very late and only as part of the comfort care (dying) plan. So you will want to speak up and ask for good palliative support while your loved one is healing and later on when they are dying. Patients should not be suffering or be in pain. Doctors now know how to take care of these symptoms, but if your doctor doesn’t or won’t help, then ask for a referral to someone who does. But be careful because some doctors will think you mean palliative care as in dying support. Make sure you explain what you are asking for, recovery support or dying support.
So, back to your question: If the doctor in the hospital says comfort care, they mean dying care. If they say palliative care in the hospital, they probably mean dying but they might just mean suffering care. You will need to clarify this with them. If they say hospice, then that means you will probably be discharged from the hospital to go home to die.
If a doctor wants to make the patient comfort care in the hospital, the patient can probably go home on hospice or perhaps to a facility that can handle their medical situation with hospice support. If your loved one wants to die at home, you need to advocate for them and say, “They would like to go home on hospice.” You need to speak up about where and how your loved one would like to die. They are entitled to a good death and so are you.
Have a kind and respectful day.
Is my grief normal? Do other people cry this much?
I was sitting with a friend whose husband died 6 weeks ago. She wept and talked then stopped crying and talked then wept again. At one point she asked me, “Is this normal? Do people who you help act like me?” The answer of course is yes. Tears are a normal part of grief. And tears don’t go away quickly. They may last for a lifetime. But the good news is it does get better. When my dad died, the tears wouldn’t stop. Then after a few weeks, the tears only came a few times a day. And now years later, the tears only come up a few times a month.
You shouldn’t have to apologize or excuse yourself for real emotion. If you didn’t love the person, then you wouldn’t cry. And if you aren’t crying, that is okay too. Everyone uses different emotions to process their grief. You may be angry or tired or numb. The only thing you need to do is to experience the grief and overtime it will get easier. If it isn’t getting easier, then get some help.
Have a kind and respectful day.
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