The Rational Basis® of Happiness Podcast

The Selfish Path to Romance. Download chapter one for free at DrKenner.com, and at Amazon.com. Not interested in other men. I love you.

I am no longer someone to love. I am an object that has to be taken care of for the rest of his life. I don't know why you do. I have to be on a dialysis machine four hours. None of that matters to me. Matters to me.

Now, what happens when you're facing end-of-life issues? Nobody wants to talk about it. People want to sweep it under the rug. But you may have a loved one in your family, an older parent or a grandparent who is in that situation. How do you deal with that? And if you're the patient yourself, if you get a diagnosis of terminal XYZ, terminal cancer, or some terminal illness, how do you cope with it? What are some of the biggest fears of patients? And with me to discuss this is Dr. Ed Martin. He's the medical director from Home and Hospice Care of Rhode Island. Welcome to the show, Ed.

Thank you, Woody.

What would you, from your experience in working with many, many patients, and I'm assuming that, how many would you say over the years?

Well, thousands.

Thousands. What are some of the biggest obstacles or fears that patients face?

Well, I think many, many patients fear that their symptoms won't be well controlled. And to be honest, I think they've had good reason for fear.

Can you give an example of that?

Well, I think they fear that their pain won't be well controlled, that the shortness of breath won't be well controlled. And I think it's true that in the healthcare system in general, we haven't always done the best job in terms of controlling those kinds of symptoms, particularly if we're, you know, in a setting where our focus really isn't controlling symptoms, but in curing. So in the acute care settings where we bring all the resources to bear, to cure, to prolong survival, but yet often we don't, you know, I think many studies have shown that we really don't pay very good attention to controlling symptoms.

So with this, would one example be I walked into the nursing home, this is true, the other day, and my mother-in-law's oxygen was pushing, not into her nose, the little leads, but they were pushing into her cheek. So obviously, she was getting no oxygen. Is it that type of thing where she could have shortness of breath, and she had a stroke, so she can't control it?

Yeah, it just hasn't, it really hasn't been a focus until the last couple of years. It's just very, very recently that even pain, a very common symptom among, you know, patients in general, but particularly terminally ill patients, has really gotten any kind of systematic attention. And yet, still, there was a study that came out a couple of years ago that looked at patients with advanced cancer in nursing homes and found that about a third, even though they had pain every day, got absolutely nothing for pain. So I think it pointed out to us still that there's still tremendous room for improvement.

And you work with hospice. What would hospice do in that situation?

Well, I think what hospice tries to do is really just try and shift the focus away from some of the things that really are less important at that point, away from, say, tight control of the blood sugar, away from exquisite control of the blood pressure, and really try and bring the focus into, you know, what's going to improve the quality of that person's life at that point. How can we make this person more comfortable? So let's make relief of their pain their absolute number one priority. And so the hospice nurse who's coming in either to the home or the nursing home, or to whatever setting that the patient's in, would really be on a daily basis trying to be sure that, well, within the next 24 hours, let's get this pain under good control, or the shortness of breath, or the nausea, or whatever symptom it was that was most troubling for that person. So I think, you know, and certainly with the medications we have available, there's no reason that we can't offer our patients, you know, very good control of symptoms. It simply has to become a priority of the care. And I think that's what happens in hospice.

You know, I noticed that hospice, when my father-in-law was using hospice, when we were using hospice with him, they focused on the quality of life, not only in symptom relief but on his creature comforts, his being able to watch golf on TV if he loved golf, his being able to sit in his easy chair if he loved that, even if it weren't the most comfortable thing, you know, they were focused on him as an individual, and I love that aspect of it. If he wanted to eat a piece of chocolate, which is obviously not good for you at the age of 89, they said, go ahead, eat it, because you already know that he's not going to get better, that he's terminally ill, and so they would let him enjoy his life.

Yeah, I think that's a very good point, because I think oftentimes those of us on the medical side, we really view our patients through a physical lens, and we're worried about their physical comfort. But I think you're absolutely right. Hospice goes far beyond worrying about the physical comfort. And I've had physicians say to me in the past, well, gee, I know my patient would need hospice, but they're not having any pain. They view hospice really as sort of the pain management team. But as you point out, it really goes far beyond that. And really, hospice, I think, looks at comfort throughout all the dimensions: social comfort, emotional comfort, spiritual comfort, psychological comfort. And really, you know, based on the patient's needs and wishes, hospice tries to make improvement in those areas.

And they make an overall plan for the patient, rather than it just being one provider coming in and then someone from a different organization coming in. There's more coordination with hospice, right?

Right. Basically, you're assigned a nurse who basically becomes the coordinator of your care and hopefully, depending on what your needs are, brings in the people that you're going to need to assist in your care to make you more comfortable.

We were down in Florida when my father-in-law got diagnosed, and we had one weekend. You know, the doctor told us about the diagnosis, and he said, look into hospice. And hospice to us spelled death. I mean, we had that in a, you know, and it does in one sense, but it wasn't the way we were thinking of it. It was like an old person's home to die. And we went to see the hospice center, and it was lovely. They had palm trees, they had flowers growing, and it was really, it was focused on creature comforts. And it just shocked me, and it was an eye-opener, because that's not the image I had of hospice. The people were delightful there, and he ended up not going into the inpatient center. He ended up, as I mentioned, dying at home, you know, living at home and having hospice come into the home. And it worked out beautifully. But I wonder if you could talk a little bit about the options that hospice does offer to the patient themselves.

I gotta interrupt this, because we've got to pay some bills. 30 seconds, that's it. A very quick ad, and then Alan will be back.

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But I wonder if you could talk a little bit about the options that hospice does offer to the patient themselves.

Well, I think, as you mentioned, you know, home is really where the roots of hospice are. And really, I think, when hospice got started in the 1970s, it was to allow people an alternative to dying in the hospital, and that was to assist them in dying at home. But really, depending on what the needs of the patient and family are, we basically are assisting patients in either remaining at home or sometimes coming into our inpatient unit, which is a more home-like setting. Or for some patients, the nursing home may have become their home. They may have been in a nursing home for several years, and so we'll, you know, if they wish to remain there in the nursing home, then our goal is to allow that to happen as well. So basically, it's to allow, you know, based on what the patient's goals are and what their preferences are, to allow them to remain in whatever setting it is they'd wish throughout the rest of their life.

So it's respecting the patient's choice-making too, if they're capable of making those choices, right?

And that was another shock to me, when the doctor pulled us aside and talked about whether we wanted hospice involved or not. My husband and I thought it was our decision. Hospice came on the scene and said, well, is your father able to communicate? We said, oh, yeah, he's perfectly aware. And they said, well, you know what, it's his decision. They were very nice to us, but they basically told us it's not your decision to make. It's his life, and he can make the decision whether he wants us involved or not.

Absolutely. And I just, that was so touching to me to hear that.

So what if somebody wants hospice? What would you recommend? Or, you know, they have a family member dying, or if they themselves are going through difficult times, how do you recommend contacting them, Dr. Martin?

Well, simply, you know, calling hospice. The agency I work with, Home and Hospice Care of Rhode Island, we're in the phone book. You know, there's no take-call in effect, we're about admitting on weekends and holidays, and we will, certainly, if there's, you know, we will get in touch with your family, your physician, or your family member's physician, to discuss whether or not hospice might be appropriate.

And then you can coordinate a plan.

Absolutely, if the person wants it.

So it's Home and Hospice Care of Rhode Island if you're in Rhode Island, but it's also nationwide. Thank you so much for joining us. This is Dr. Ed Martin, who is the medical director of Home and Hospice Care of Rhode Island. Thank you.

For more Dr. Kenner podcasts, go to DrKenner.com, and please listen to this ad.

Here's an excerpt from "The Selfish Path to Romance" by Drs. Kenner and Locke:

The best proof of whether a person loves you is how that person acts toward you on a daily basis. Suppose your partner spends so much time at work you virtually never see him or her. Then it would be appropriate to ask, "Honey, if I'm so unimportant relative to work, why did you want to marry me?" As to time spent on one's career, there are no rules about how many hours one should or shouldn't work. This can change from day to day, week to week, month to month, or job to job. Every couple has their own personal needs and unique context regarding the amount of time spent together. For example, if a partner has been called up for active duty in the military, then obviously the context is important, and long periods of time without one another may be unavoidable.

You can download chapter one for free at DrKenner.com and you can buy the book at Amazon.com.