Narrator: [00:00:04] If you want to make someone squirm, bring up either sex or dying. Most humans aren't particularly comfortable discussing either topic, which makes sexuality at the end of life an even more vexing situation. Welcome to the Sexually Speaking podcast with sex educator and therapist Melanie Ramey. Melanie says we should not assume that those who are terminally ill have lost interest in sexual relationships.
Melanie Ramey: [00:00:34] Hello and welcome to Sexually Speaking, and I'm Melanie Ramey. And we're really glad that you're joining us for this particular podcast, because we're going to deal with two big taboos. And the taboos are talking about sexuality and talking about end of life. This is a culture, for example, that really doesn't talk much about either one of these. And so this podcast is going to put them together because we think that there is a connection between them. And as you know, here we talk about human sexuality as being the core of who we are as human beings and that we certainly have sexual experiences. But sexuality is who we are, and our sexual experiences is what we do. But I wanted to begin to talk about end of life, because, again, this is the subject that nobody likes to talk about. And it's really quite interesting because in the last few months, I had occasion to hear a presentation by a physician who is one of a group in a startup company. And the goal of this company is to develop a medication so that people will live to be 150 years old. And he seemed very enthused about this whole thing that people could live to be 150 years old. Now, they have not tested any of this yet in humans. But he did have a video of a dog. And in the beginning of the video, the dog was just, hardly looked like it was alive.
Melanie Ramey: [00:02:25] And then after, of course, administration of this medication, the dog just jumped up and was running around. You couldn't believe it, how spry it was. And this, of course, was supposed to illustrate that this particular injection of some kinds of combinations of hormones was what did it. Now, I raised the question with him about what kind of side effects that this might have, because studies of other hormones have indicated that they can sometimes be causal agents for cancer, etc. Oh, he assured me this did not have any kinds of side effects because I don't know how I knew since they hadn't tested in humans, but nonetheless. The other thing was that I did inquire around about other people who were present. And no one wanted to live to be 150 years old. Because if you lived to be 150, this means you probably have to work to your 125, etc., etc. and then have to have enough money in all these years to last out. It did not appeal to a lot of people. In addition to the fact that another physician who was present came up and said to me, oh, Melanie, he said, don't pay attention to what he said about side effects, because it would have side effects. So in any event, I think it's just an example of how some people don't want people to die? They just keep on stretching out life and then 150 and so forth.
Melanie Ramey: [00:04:06] It makes no sense in a lot of ways, but nonetheless, it's an idea that some people think, well, should be able to live forever. And if that's the case, then we won't have to talk about what happens when people die. Now, what happens when people have a terminal illness? Know that they're not doing well? Maybe the physicians have said there's nothing else we can do. What are the alternatives? Well, first of all, I might say that this is one of the other issues, is that many physicians do not know how to tell people that there's nothing else they can do. And I have heard many, many stories of people not even understanding - members of the family - not even understanding that a member of their family is terminally ill because of the way the physician spoke or didn't speak, as the case may be. I remember well one instance where a woman told me that her mother was really quite ill and she and her sister felt like their mother was terminally ill. But the doctor had not ever said anything to them about the length of her prognosis and so forth. So she and her sister went to the hospital at one day to wait until the physician showed up and they were going to ask him flat out about their mother's situation.
Melanie Ramey: [00:05:41] Well, he came, he did a very cursory examination of the mother, turned around and walked out. And so she jumped up and ran after him down the hall. And she said, wait, wait, I want to ask you is my mother dying, or is our mother dying? And his response was, well, the horse is really out of the barn now. She was dumbfounded. She said to me, does that mean my mother's dying? I said, it means he's a fool, is what it means. I said, I think he was trying to say that your mother is dying. But that is just an example of the fact that many physicians do not know how to communicate this to family. So a lot of times, families are sort of surprised when suddenly a person becomes very critically ill. But if people know that they're terminally ill and their family understands it, a lot of times people will choose to use hospice care. And one of the things to understand about hospice care is that it's not all the same. That hospice care is not delivered in the same way all over this country. It varies greatly. And one of the problems that we deal with, this issue of sexuality, is that hospices do an initial assessment of patients to determine what their situation is, what things they'll need in terms of care and so forth. But they do not do anything about a sexual assessment.
Melanie Ramey: [00:07:24] And it's really unfortunate because this is an issue for people when they are terminally ill. What happens when people are getting ready to die is that they're dealing emotionally with the ideas of losing everything they've held on to all their lives. Saying goodbye to everybody and everything. And this is a very important issue. And to have it totally and completely ignored by people who are taking care of you is not helpful. And the main reason I think that this happens is because people are not trained in how to do a sexual assessment with someone who is terminally ill. You speak to nurses and they say nobody trained them in how to do it. Nobody told them what they were supposed to ask. And so they don't ask anything. And the whole issue gets ignored. The other issue is that the plan of care or the object of care in hospice is the family. And so you have other members of the family, like a spouse, partner, someone who has been in a relationship with that person, that person also needs to have someone to talk with him about the sexual issues that are involved at end of life, because it sometimes has to do with the diagnosis the person has a cancer or heart disease or whatever it is.
Melanie Ramey: [00:09:05] People need to know, is it okay to have some sort of a sexual relationship because of the diagnosis. Also, there are lots of kinds of issues, and yet there's not anybody that can answer the questions or not anybody that's willing to. A 2019 study found that nurses did not assess patients sexual needs because they just said they simply nobody told them how to do it. And so this has been verified time and again. And the nurse is the main person that is going to be sort of in charge of the care at the end of life. Although there is a medical director, rarely does the medical director interact directly with the patient. It's usually the nurse or the social worker. And again, the social workers are not trained to do these sorts of assessments at the end of life. So one of the things that patients families can do is simply to bring up the subject. But again, that's not always easy for them to bring up the subject. And then especially if they have, they bring up the subject and the professional person doesn't know how to respond, it's really not very helpful at all. I think that when the issue comes up, that one of the problems that some of the professional people have is that their communication skills simply are not what they need to be.
Melanie Ramey: [00:10:49] They don't know how to talk about sexual intimacy. And so that's a real barrier. They may have their own biases that are getting in the way. And so it's easier just to avoid the topic and not even address it at all. But it really makes life even more difficult for people at the end of life. So the real barriers seem to be that they lack clinical training in this area. They lack perspective on how it is for people to be in this position, because by the time a person is terminally ill near the end of life a lot of things have happened to them. And a lot of times the diagnosis they have has caused them to undergo a lot of physical changes. They don't look the same, and they are also having issues with their own feelings about their bodies and about how they look and so forth and so on. And so they really do need to have somebody who can kind of reassure them and help them to cope with some of these feelings. But I think that sometimes people, professionals will use the excuse, 'Well, I didn't bring it up because I didn't want to intrude'. Well, I mean, that is really ridiculous. It's not an intrusive thing. It's a helpful thing because people have sexual health all of their life.
Melanie Ramey: [00:12:29] And so that is honestly just an excuse. And I think the other thing is that they think that, well, the patient doesn't really want to do it, but the thing they need to do is to ask the patient, Would you like to talk about your sexual health? Would you like to talk about sexual things? And then the patient can say yes or no, so you can ask the permission to talk with them about it. And I think you would be really, really surprised at how often the patient welcomes that. I think that to assume that it's not important to patients is really based on the professional person's idea about aging. You know, there are lots of ideas people have about when, as particularly if their patient is older, that well, this is not something that they're interested in it also, that's why I'm not going to talk about it. And yet we know, of course, from the studies that have been done that people in their 70s and 80s continue to have sexual relationships in their 90s, even. And so aging is just not where it's at. It's also another one of those excuses. The other thing is sometimes people say, well, their diagnosis. You know, they've got cancer, they've got heart disease, they've got whatever disease they have and so therefore this cannot be an issue.
Melanie Ramey: [00:14:04] It can sometimes be more of an issue actually, particularly for other members of the family, because they know if their loved one has a certain diagnosis and they don't want to do something that may make it painful or more difficult. And so they need to have some guidance in this area too. So the diagnosis is not a reason not to. The other thing is about relationship status. Well they say I'm not real sure what the marriage is like, if this is a good marriage and if people have been having good relationship. So I don't want to intervene in that. Well, there's one way to determine that and that's ask a few questions. You can ask how would you describe your marriage, has it been happy marriage or has it had difficulties and so forth. And you'll find that people are very willing to share that with you. And then the other thing, of course, is culture. What, how does the culture deal with these things? And as we were just saying initially, the culture tends to try to deny that these are even issues. And of course, if you're dealing with patients who have a background in another culture and a different culture from the American culture, you do need to pay attention and understand it.
Melanie Ramey: [00:15:36] Understand what their cultural orientation would be, and there are easy ways to do that. And one of the ways is to ask other members of the family who are not ill, to say, what would be common in your culture for people at the end of life in terms of their relationships? And they will tell you. They'll tell you that well, we don't touch people if they have diseases. Or we do, we want to be sure to caress them all the time. We want them to know we're here and we're loving them and so forth. So find out, this whole thing of just say, well, I don't know, I never talked to a person before from that country is no excuse. And so get over it and simply do a professional job in trying to reach out to people. And that's also true with people in the family. Because again, we need to understand that at the time someone is terminally ill, the whole family is also a part of what's going on. And so it's really important to touch base with the other members of the family and be of help to them, if you can, at all. I think that there are some really basic things in communicating with people at the end of life.
Melanie Ramey: [00:17:14] And one of them is to really pay attention to the environment, to make sure that it's conducive to discussion. Now people are in different places at the time they come to the end of life. Some people are in their own homes. Many people prefer to be in their own homes. Sometimes that's possible. Sometimes it's not possible. Or sometimes there may be an assisted living facilities. Sometimes they may be in nursing homes. But wherever they are, when you're going to have these kinds of discussions, make sure that you can have a private discussion. Now sometimes, for example, if they happen to be in a nursing home, if there are still some that have people share rooms, that can present a problem. But one of the things the professional person needs to do is to, if at all possible, take the patient to a private room and have these kinds of discussion with them. So make sure that the environment that you're going to talk with people in is conducive to having a discussion, and that everybody else in the whole place can't hear what's going on. The second thing is to listen to what the person tells you and not assume certain things. If you've asked a question, let them answer. Don't make an assumption that you already know what the answer is going to be, because sometimes you could be very surprised.
Melanie Ramey: [00:18:51] The other thing is to show some empathy because this is, dying is not an easy thing. Sometimes people are what are considered ready to die. I mean, they've had a long illness. Maybe they've also lived a long life, had a good life, and they feel that they may be more, quote, ready than others are. But in any event, if they feel ready or not, it's a loss. It's a loss to their family. It's a loss to them of their life. And so it's an important thing. And so to show empathy for the situation that they're in, not just say, oh, well, everybody dies and don't pay any attention to what they're saying. The other thing I think is really it's important that by your attitude, you empower patients and their families to bring up the subject. And you can even do that by saying is there something else you would like to talk about that we haven't covered? And then somebody can say, well, I'd like to talk about sexual things. I have some questions about so forth. So there's a way to use open ended questions to let people express some of their own ideas and some of their own questions. The other thing is that to not be rushed, sometimes when people come in, the staff comes in from the hospice or from home health or whatever, they've got several patients they're going to see. And so they sort of rush in and check people's vital signs, etc., and don't really indicate they have time to talk to you.
Melanie Ramey: [00:20:45] And that's not helpful, that's really not helpful because lots of times, of course, people end of life, don't have a long time to live. And if they need to say something, they can't just put it off for 3 or 4 weeks until you decide to come back. So these are really kinds of things that people who are dealing with people at the end of life need to understand. Yeah, a lot of times people have palliative care. They have palliative care before they have hospice, and maybe they never have hospice. But palliative care is not hospice, hospice is not palliative care. But the same issues are the people who have palliative care, who usually have chronic illnesses and usually have a lot of pain. And the one of the main goals of palliative care is the management of pain for people who have serious illnesses. But again, it's the same thing that there are very, very few patients in the studies that have been done who have ever had anybody ask about their sexual health while they're palliative care patients. And so I think that 100% of palliative care patients who have been studied have said they would welcome an opportunity to talk with somebody about their sexual health or sexual questions or whatever that they have to have so, or that they must have.
Melanie Ramey: [00:22:19] So it's really a time when the two taboos that we have in our culture come together. And yet they often do not come together very well simply because of the fact that the culture does not welcome these kinds of conversations. I think another thing that we know from some of the studies that have been done is that, um, that there is increasing awareness, I think, in terms of the fact that there are issues around sexuality at the end of life. And so the awareness has sort of come from patients, of course, asking questions and then professional people going back and talking with their supervisors about this patient wanted to know this or that and I didn't know how to answer. And I think that's one of the things that if you are a patient or a member of a patient's family and you think that there needs to be some conversation, that you should really push the issue because maybe there is another person on the staff who could come and be helpful to you or your family member at the end of life.
Melanie Ramey: [00:23:46] So why is this such a difficult thing? Well, I think one of the things is it's just been difficult since the beginning in this culture because we have tended to shy away from the whole issue of sexuality and talking about sex. And so then when you combine that with ideas about people who are aging or people who are sick or people who have disabilities, and you put the two together, it just becomes a topic that makes life very difficult for people at the end of life to be totally ignored in this way. So I think as we think about this in terms of people we know and people that we have in our families and friends who are at the end of life that it's not hurtful, actually, to bring up the subject yourself and say, have you talked to the hospice nurse or have you talked to the home health social worker? Have you brought up, help them know that they can bring up the subject because it's something that is important to them. A lot of times, there are issues that come up that really require somebody to actually have a response. For example, I've known a situation where a person, a man, 75 years old, wanted to have a sexual relationship again before he died. So, how do you respond to that? What happens in a situation like that? Well, does he have a possible partner? Should there be some sort of professional partner? I mean, that exists in certain places, surrogates, etc., that could actually be something that would come up that somebody would say, well, I don't want to die without having sex one more time.
Melanie Ramey: [00:26:03] And so, if that happens, how do you respond, or if you're a family member, how do you respond to that? So it really is something that does not just go out like a light, just because somebody gets a terminal diagnosis. The University of Maryland people have done quite a bit of studies about how to develop techniques and how to talk with people. And so, the whole thing of getting permission and asking specific questions and giving specific simple answers, not long, big, long lectures, results really in the best outcomes. Obviously, if a person has time and there's time you could actually have some sort of therapy. But at the end of life, that's not a very realistic outcome, because people don't have a long time to engage in therapy and all, but just the conversations and some specific answers to their questions, is enough to give people some peace and all. Because the other thing, the whole thing, you're saying, well, if somebody, is at the end of life, sometimes they're older, but they're not always older, but this is just something they have to accept. But it's not easy to accept all this change in body image that people have, especially if somebody has been a very beautiful person or a handsome man or whatever, to suddenly have diseases that you lose your hair, you lose your weight, you lose all of this.
Melanie Ramey: [00:27:55] This is a very, all kinds of adjustments are going on at the same time that relate both to the end of life and to sexuality. And so to be able to help people with these is very important. But the other thing is that it's also very important to always observe the professional boundaries. And as I mentioned, so if somebody says I would like to have sexual intercourse one more time before I die well, you need to address that and there are ways to address it, but be sure to be clear about the professional boundaries and that does not involve you. The other thing is that I've had the experience of a young person, like 15 or 16 years old, who was dying. And his idea was he would like to have a sexual relationship before he died. And you can again see, because you would be a teenager with all sorts of hormonal things going on in him. At the same time, he may have a terminal diagnosis. So what do you do about it?
Melanie Ramey: [00:29:15] Well, in one instance, in my own personal experience was the family was considering hiring a surrogate for this occasion, and I'm not sure how it turned out because there weren't that many alternatives and it was a city where surrogates did exist. But this was, again, you say, well, I was shocked when I heard this and I, because I just never thought about it. Well, this young man was still a human and he had read all about sex and it had gotten as I say, his hormones were aroused. And so he thought, well, before I die, I would like to have a sexual experience. So in any event, there is something to be said for the quality of life at the end of life and dealing with the whole person at the end of life is just as important as dealing with them when they're not at the very end of life, and their sexuality is a part of their life at the end of life. And I think that we can do a lot better in terms of serving people and helping people to be comfortable at this critical time. And one of the things that we talked about on one of the previous podcasts was the absolute essential thing of touching people.
Melanie Ramey: [00:30:50] And it's very, very important because the feel is one of the last things that goes as we're dying. And so if a person is in the hospital bed and so forth, you can still always touch them. I would also mention that there now exists hospital beds for two people. And again, this has sort of come about in very recent times because it's possible for a partner to share a hospital bed with somebody who's ill. And before this was a barrier, because the hospital bed was just like a single bed. And it certainly was difficult for two people to be in that bed together. They had to be two of the skinniest people on earth. But now then, you have a double hospital bed. So if this is the case in your family or among people you can say to them, did you know that you can get a double hospital bed? Because, again, this can be very comforting to both a partner and to the person who's who's dying, to have somebody in the bed with them. So, the comfort at the end of life is a very important thing, but it's also important for the people who are surviving because, you know what happens as somebody dies, it's not something you forget.
Melanie Ramey: [00:32:26] It's not something that you think, well, this happened and I'll forget. The memories of how this occurs and who's present and what's going on are really critical. So in terms of how to help people die more peacefully and comfortably, the whole issue of their sexuality is an important one and it's important for their survivors. So I know you have never probably listened to a conversation like this before, and that's why we're having it. But I hope that you will think about it. And if you are a professional person and you work in the area with patients, or if you are a family member and some person becomes ill or terminally ill in your family, and if you as a person, when you come to this point in your life, remember, first of all, if you're the person who's the patient, you can ask questions. Ask somebody, I want to talk about this. I want you to bring somebody here who can help me. If you're a family member, you can bring up the subject. If you're a friend, you can bring up the subject. And you can always ask for a hospital bed for two people. So, in any event, thanks for listening. And stay well until next time.
Narrator: [00:33:56] You've been listening to Sexually Speaking with sex educator and therapist Melanie Ramey. Please visit us on Facebook, Instagram, and LinkedIn.
Melanie Ramey: [00:00:34] Hello and welcome to Sexually Speaking, and I'm Melanie Ramey. And we're really glad that you're joining us for this particular podcast, because we're going to deal with two big taboos. And the taboos are talking about sexuality and talking about end of life. This is a culture, for example, that really doesn't talk much about either one of these. And so this podcast is going to put them together because we think that there is a connection between them. And as you know, here we talk about human sexuality as being the core of who we are as human beings and that we certainly have sexual experiences. But sexuality is who we are, and our sexual experiences is what we do. But I wanted to begin to talk about end of life, because, again, this is the subject that nobody likes to talk about. And it's really quite interesting because in the last few months, I had occasion to hear a presentation by a physician who is one of a group in a startup company. And the goal of this company is to develop a medication so that people will live to be 150 years old. And he seemed very enthused about this whole thing that people could live to be 150 years old. Now, they have not tested any of this yet in humans. But he did have a video of a dog. And in the beginning of the video, the dog was just, hardly looked like it was alive.
Melanie Ramey: [00:02:25] And then after, of course, administration of this medication, the dog just jumped up and was running around. You couldn't believe it, how spry it was. And this, of course, was supposed to illustrate that this particular injection of some kinds of combinations of hormones was what did it. Now, I raised the question with him about what kind of side effects that this might have, because studies of other hormones have indicated that they can sometimes be causal agents for cancer, etc. Oh, he assured me this did not have any kinds of side effects because I don't know how I knew since they hadn't tested in humans, but nonetheless. The other thing was that I did inquire around about other people who were present. And no one wanted to live to be 150 years old. Because if you lived to be 150, this means you probably have to work to your 125, etc., etc. and then have to have enough money in all these years to last out. It did not appeal to a lot of people. In addition to the fact that another physician who was present came up and said to me, oh, Melanie, he said, don't pay attention to what he said about side effects, because it would have side effects. So in any event, I think it's just an example of how some people don't want people to die? They just keep on stretching out life and then 150 and so forth.
Melanie Ramey: [00:04:06] It makes no sense in a lot of ways, but nonetheless, it's an idea that some people think, well, should be able to live forever. And if that's the case, then we won't have to talk about what happens when people die. Now, what happens when people have a terminal illness? Know that they're not doing well? Maybe the physicians have said there's nothing else we can do. What are the alternatives? Well, first of all, I might say that this is one of the other issues, is that many physicians do not know how to tell people that there's nothing else they can do. And I have heard many, many stories of people not even understanding - members of the family - not even understanding that a member of their family is terminally ill because of the way the physician spoke or didn't speak, as the case may be. I remember well one instance where a woman told me that her mother was really quite ill and she and her sister felt like their mother was terminally ill. But the doctor had not ever said anything to them about the length of her prognosis and so forth. So she and her sister went to the hospital at one day to wait until the physician showed up and they were going to ask him flat out about their mother's situation.
Melanie Ramey: [00:05:41] Well, he came, he did a very cursory examination of the mother, turned around and walked out. And so she jumped up and ran after him down the hall. And she said, wait, wait, I want to ask you is my mother dying, or is our mother dying? And his response was, well, the horse is really out of the barn now. She was dumbfounded. She said to me, does that mean my mother's dying? I said, it means he's a fool, is what it means. I said, I think he was trying to say that your mother is dying. But that is just an example of the fact that many physicians do not know how to communicate this to family. So a lot of times, families are sort of surprised when suddenly a person becomes very critically ill. But if people know that they're terminally ill and their family understands it, a lot of times people will choose to use hospice care. And one of the things to understand about hospice care is that it's not all the same. That hospice care is not delivered in the same way all over this country. It varies greatly. And one of the problems that we deal with, this issue of sexuality, is that hospices do an initial assessment of patients to determine what their situation is, what things they'll need in terms of care and so forth. But they do not do anything about a sexual assessment.
Melanie Ramey: [00:07:24] And it's really unfortunate because this is an issue for people when they are terminally ill. What happens when people are getting ready to die is that they're dealing emotionally with the ideas of losing everything they've held on to all their lives. Saying goodbye to everybody and everything. And this is a very important issue. And to have it totally and completely ignored by people who are taking care of you is not helpful. And the main reason I think that this happens is because people are not trained in how to do a sexual assessment with someone who is terminally ill. You speak to nurses and they say nobody trained them in how to do it. Nobody told them what they were supposed to ask. And so they don't ask anything. And the whole issue gets ignored. The other issue is that the plan of care or the object of care in hospice is the family. And so you have other members of the family, like a spouse, partner, someone who has been in a relationship with that person, that person also needs to have someone to talk with him about the sexual issues that are involved at end of life, because it sometimes has to do with the diagnosis the person has a cancer or heart disease or whatever it is.
Melanie Ramey: [00:09:05] People need to know, is it okay to have some sort of a sexual relationship because of the diagnosis. Also, there are lots of kinds of issues, and yet there's not anybody that can answer the questions or not anybody that's willing to. A 2019 study found that nurses did not assess patients sexual needs because they just said they simply nobody told them how to do it. And so this has been verified time and again. And the nurse is the main person that is going to be sort of in charge of the care at the end of life. Although there is a medical director, rarely does the medical director interact directly with the patient. It's usually the nurse or the social worker. And again, the social workers are not trained to do these sorts of assessments at the end of life. So one of the things that patients families can do is simply to bring up the subject. But again, that's not always easy for them to bring up the subject. And then especially if they have, they bring up the subject and the professional person doesn't know how to respond, it's really not very helpful at all. I think that when the issue comes up, that one of the problems that some of the professional people have is that their communication skills simply are not what they need to be.
Melanie Ramey: [00:10:49] They don't know how to talk about sexual intimacy. And so that's a real barrier. They may have their own biases that are getting in the way. And so it's easier just to avoid the topic and not even address it at all. But it really makes life even more difficult for people at the end of life. So the real barriers seem to be that they lack clinical training in this area. They lack perspective on how it is for people to be in this position, because by the time a person is terminally ill near the end of life a lot of things have happened to them. And a lot of times the diagnosis they have has caused them to undergo a lot of physical changes. They don't look the same, and they are also having issues with their own feelings about their bodies and about how they look and so forth and so on. And so they really do need to have somebody who can kind of reassure them and help them to cope with some of these feelings. But I think that sometimes people, professionals will use the excuse, 'Well, I didn't bring it up because I didn't want to intrude'. Well, I mean, that is really ridiculous. It's not an intrusive thing. It's a helpful thing because people have sexual health all of their life.
Melanie Ramey: [00:12:29] And so that is honestly just an excuse. And I think the other thing is that they think that, well, the patient doesn't really want to do it, but the thing they need to do is to ask the patient, Would you like to talk about your sexual health? Would you like to talk about sexual things? And then the patient can say yes or no, so you can ask the permission to talk with them about it. And I think you would be really, really surprised at how often the patient welcomes that. I think that to assume that it's not important to patients is really based on the professional person's idea about aging. You know, there are lots of ideas people have about when, as particularly if their patient is older, that well, this is not something that they're interested in it also, that's why I'm not going to talk about it. And yet we know, of course, from the studies that have been done that people in their 70s and 80s continue to have sexual relationships in their 90s, even. And so aging is just not where it's at. It's also another one of those excuses. The other thing is sometimes people say, well, their diagnosis. You know, they've got cancer, they've got heart disease, they've got whatever disease they have and so therefore this cannot be an issue.
Melanie Ramey: [00:14:04] It can sometimes be more of an issue actually, particularly for other members of the family, because they know if their loved one has a certain diagnosis and they don't want to do something that may make it painful or more difficult. And so they need to have some guidance in this area too. So the diagnosis is not a reason not to. The other thing is about relationship status. Well they say I'm not real sure what the marriage is like, if this is a good marriage and if people have been having good relationship. So I don't want to intervene in that. Well, there's one way to determine that and that's ask a few questions. You can ask how would you describe your marriage, has it been happy marriage or has it had difficulties and so forth. And you'll find that people are very willing to share that with you. And then the other thing, of course, is culture. What, how does the culture deal with these things? And as we were just saying initially, the culture tends to try to deny that these are even issues. And of course, if you're dealing with patients who have a background in another culture and a different culture from the American culture, you do need to pay attention and understand it.
Melanie Ramey: [00:15:36] Understand what their cultural orientation would be, and there are easy ways to do that. And one of the ways is to ask other members of the family who are not ill, to say, what would be common in your culture for people at the end of life in terms of their relationships? And they will tell you. They'll tell you that well, we don't touch people if they have diseases. Or we do, we want to be sure to caress them all the time. We want them to know we're here and we're loving them and so forth. So find out, this whole thing of just say, well, I don't know, I never talked to a person before from that country is no excuse. And so get over it and simply do a professional job in trying to reach out to people. And that's also true with people in the family. Because again, we need to understand that at the time someone is terminally ill, the whole family is also a part of what's going on. And so it's really important to touch base with the other members of the family and be of help to them, if you can, at all. I think that there are some really basic things in communicating with people at the end of life.
Melanie Ramey: [00:17:14] And one of them is to really pay attention to the environment, to make sure that it's conducive to discussion. Now people are in different places at the time they come to the end of life. Some people are in their own homes. Many people prefer to be in their own homes. Sometimes that's possible. Sometimes it's not possible. Or sometimes there may be an assisted living facilities. Sometimes they may be in nursing homes. But wherever they are, when you're going to have these kinds of discussions, make sure that you can have a private discussion. Now sometimes, for example, if they happen to be in a nursing home, if there are still some that have people share rooms, that can present a problem. But one of the things the professional person needs to do is to, if at all possible, take the patient to a private room and have these kinds of discussion with them. So make sure that the environment that you're going to talk with people in is conducive to having a discussion, and that everybody else in the whole place can't hear what's going on. The second thing is to listen to what the person tells you and not assume certain things. If you've asked a question, let them answer. Don't make an assumption that you already know what the answer is going to be, because sometimes you could be very surprised.
Melanie Ramey: [00:18:51] The other thing is to show some empathy because this is, dying is not an easy thing. Sometimes people are what are considered ready to die. I mean, they've had a long illness. Maybe they've also lived a long life, had a good life, and they feel that they may be more, quote, ready than others are. But in any event, if they feel ready or not, it's a loss. It's a loss to their family. It's a loss to them of their life. And so it's an important thing. And so to show empathy for the situation that they're in, not just say, oh, well, everybody dies and don't pay any attention to what they're saying. The other thing I think is really it's important that by your attitude, you empower patients and their families to bring up the subject. And you can even do that by saying is there something else you would like to talk about that we haven't covered? And then somebody can say, well, I'd like to talk about sexual things. I have some questions about so forth. So there's a way to use open ended questions to let people express some of their own ideas and some of their own questions. The other thing is that to not be rushed, sometimes when people come in, the staff comes in from the hospice or from home health or whatever, they've got several patients they're going to see. And so they sort of rush in and check people's vital signs, etc., and don't really indicate they have time to talk to you.
Melanie Ramey: [00:20:45] And that's not helpful, that's really not helpful because lots of times, of course, people end of life, don't have a long time to live. And if they need to say something, they can't just put it off for 3 or 4 weeks until you decide to come back. So these are really kinds of things that people who are dealing with people at the end of life need to understand. Yeah, a lot of times people have palliative care. They have palliative care before they have hospice, and maybe they never have hospice. But palliative care is not hospice, hospice is not palliative care. But the same issues are the people who have palliative care, who usually have chronic illnesses and usually have a lot of pain. And the one of the main goals of palliative care is the management of pain for people who have serious illnesses. But again, it's the same thing that there are very, very few patients in the studies that have been done who have ever had anybody ask about their sexual health while they're palliative care patients. And so I think that 100% of palliative care patients who have been studied have said they would welcome an opportunity to talk with somebody about their sexual health or sexual questions or whatever that they have to have so, or that they must have.
Melanie Ramey: [00:22:19] So it's really a time when the two taboos that we have in our culture come together. And yet they often do not come together very well simply because of the fact that the culture does not welcome these kinds of conversations. I think another thing that we know from some of the studies that have been done is that, um, that there is increasing awareness, I think, in terms of the fact that there are issues around sexuality at the end of life. And so the awareness has sort of come from patients, of course, asking questions and then professional people going back and talking with their supervisors about this patient wanted to know this or that and I didn't know how to answer. And I think that's one of the things that if you are a patient or a member of a patient's family and you think that there needs to be some conversation, that you should really push the issue because maybe there is another person on the staff who could come and be helpful to you or your family member at the end of life.
Melanie Ramey: [00:23:46] So why is this such a difficult thing? Well, I think one of the things is it's just been difficult since the beginning in this culture because we have tended to shy away from the whole issue of sexuality and talking about sex. And so then when you combine that with ideas about people who are aging or people who are sick or people who have disabilities, and you put the two together, it just becomes a topic that makes life very difficult for people at the end of life to be totally ignored in this way. So I think as we think about this in terms of people we know and people that we have in our families and friends who are at the end of life that it's not hurtful, actually, to bring up the subject yourself and say, have you talked to the hospice nurse or have you talked to the home health social worker? Have you brought up, help them know that they can bring up the subject because it's something that is important to them. A lot of times, there are issues that come up that really require somebody to actually have a response. For example, I've known a situation where a person, a man, 75 years old, wanted to have a sexual relationship again before he died. So, how do you respond to that? What happens in a situation like that? Well, does he have a possible partner? Should there be some sort of professional partner? I mean, that exists in certain places, surrogates, etc., that could actually be something that would come up that somebody would say, well, I don't want to die without having sex one more time.
Melanie Ramey: [00:26:03] And so, if that happens, how do you respond, or if you're a family member, how do you respond to that? So it really is something that does not just go out like a light, just because somebody gets a terminal diagnosis. The University of Maryland people have done quite a bit of studies about how to develop techniques and how to talk with people. And so, the whole thing of getting permission and asking specific questions and giving specific simple answers, not long, big, long lectures, results really in the best outcomes. Obviously, if a person has time and there's time you could actually have some sort of therapy. But at the end of life, that's not a very realistic outcome, because people don't have a long time to engage in therapy and all, but just the conversations and some specific answers to their questions, is enough to give people some peace and all. Because the other thing, the whole thing, you're saying, well, if somebody, is at the end of life, sometimes they're older, but they're not always older, but this is just something they have to accept. But it's not easy to accept all this change in body image that people have, especially if somebody has been a very beautiful person or a handsome man or whatever, to suddenly have diseases that you lose your hair, you lose your weight, you lose all of this.
Melanie Ramey: [00:27:55] This is a very, all kinds of adjustments are going on at the same time that relate both to the end of life and to sexuality. And so to be able to help people with these is very important. But the other thing is that it's also very important to always observe the professional boundaries. And as I mentioned, so if somebody says I would like to have sexual intercourse one more time before I die well, you need to address that and there are ways to address it, but be sure to be clear about the professional boundaries and that does not involve you. The other thing is that I've had the experience of a young person, like 15 or 16 years old, who was dying. And his idea was he would like to have a sexual relationship before he died. And you can again see, because you would be a teenager with all sorts of hormonal things going on in him. At the same time, he may have a terminal diagnosis. So what do you do about it?
Melanie Ramey: [00:29:15] Well, in one instance, in my own personal experience was the family was considering hiring a surrogate for this occasion, and I'm not sure how it turned out because there weren't that many alternatives and it was a city where surrogates did exist. But this was, again, you say, well, I was shocked when I heard this and I, because I just never thought about it. Well, this young man was still a human and he had read all about sex and it had gotten as I say, his hormones were aroused. And so he thought, well, before I die, I would like to have a sexual experience. So in any event, there is something to be said for the quality of life at the end of life and dealing with the whole person at the end of life is just as important as dealing with them when they're not at the very end of life, and their sexuality is a part of their life at the end of life. And I think that we can do a lot better in terms of serving people and helping people to be comfortable at this critical time. And one of the things that we talked about on one of the previous podcasts was the absolute essential thing of touching people.
Melanie Ramey: [00:30:50] And it's very, very important because the feel is one of the last things that goes as we're dying. And so if a person is in the hospital bed and so forth, you can still always touch them. I would also mention that there now exists hospital beds for two people. And again, this has sort of come about in very recent times because it's possible for a partner to share a hospital bed with somebody who's ill. And before this was a barrier, because the hospital bed was just like a single bed. And it certainly was difficult for two people to be in that bed together. They had to be two of the skinniest people on earth. But now then, you have a double hospital bed. So if this is the case in your family or among people you can say to them, did you know that you can get a double hospital bed? Because, again, this can be very comforting to both a partner and to the person who's who's dying, to have somebody in the bed with them. So, the comfort at the end of life is a very important thing, but it's also important for the people who are surviving because, you know what happens as somebody dies, it's not something you forget.
Melanie Ramey: [00:32:26] It's not something that you think, well, this happened and I'll forget. The memories of how this occurs and who's present and what's going on are really critical. So in terms of how to help people die more peacefully and comfortably, the whole issue of their sexuality is an important one and it's important for their survivors. So I know you have never probably listened to a conversation like this before, and that's why we're having it. But I hope that you will think about it. And if you are a professional person and you work in the area with patients, or if you are a family member and some person becomes ill or terminally ill in your family, and if you as a person, when you come to this point in your life, remember, first of all, if you're the person who's the patient, you can ask questions. Ask somebody, I want to talk about this. I want you to bring somebody here who can help me. If you're a family member, you can bring up the subject. If you're a friend, you can bring up the subject. And you can always ask for a hospital bed for two people. So, in any event, thanks for listening. And stay well until next time.
Narrator: [00:33:56] You've been listening to Sexually Speaking with sex educator and therapist Melanie Ramey. Please visit us on Facebook, Instagram, and LinkedIn.
