1 00:00:02,640 --> 00:00:07,680 This programme contains some scenes which some viewers may find upsetting from the start. 2 00:00:15,800 --> 00:00:18,320 So, this is John, and, er... 3 00:00:18,320 --> 00:00:20,720 Where's the...the clapperboard? 4 00:00:20,720 --> 00:00:22,840 Camera, action! Action! 5 00:00:22,840 --> 00:00:25,600 And Avril is his daughter. 6 00:00:25,600 --> 00:00:28,600 And you were in real trouble in the care home 7 00:00:28,600 --> 00:00:30,400 you were staying in, weren't you? 8 00:00:30,400 --> 00:00:31,760 I certainly was. 9 00:00:31,760 --> 00:00:33,920 Talk to me about how you were feeling 10 00:00:33,920 --> 00:00:36,320 in the time leading up to coming in here. 11 00:00:36,320 --> 00:00:39,160 Well, I was absolutely... 12 00:00:41,800 --> 00:00:44,040 ..full of fear 13 00:00:44,040 --> 00:00:47,520 at the prospect of living for several years. 14 00:00:47,520 --> 00:00:52,200 And I was getting more and more depressed. Yes. 15 00:00:52,200 --> 00:00:55,960 Because there didn't seem to be any light at the end of the tunnel, 16 00:00:55,960 --> 00:01:00,480 until a certain person came along 17 00:01:00,480 --> 00:01:04,560 and offered me an alternative, 18 00:01:04,560 --> 00:01:07,640 which I grabbed with both hands. 19 00:01:07,640 --> 00:01:10,880 So, the alternative for you then, I guess, was, 20 00:01:10,880 --> 00:01:14,120 "Do I see, if I stop the oxygen, does that mean 21 00:01:14,120 --> 00:01:16,760 "I'm just going to die from the lung disease?" 22 00:01:16,760 --> 00:01:19,440 Was that what was in your mind at the time? Yes. 23 00:01:19,440 --> 00:01:21,960 I was being very envious... 24 00:01:23,280 --> 00:01:24,680 ..of people... 25 00:01:26,360 --> 00:01:28,320 ..who were dying 26 00:01:28,320 --> 00:01:31,560 and were leaving it all behind. 27 00:01:31,560 --> 00:01:35,440 Do you feel that the way in which we've used the medicines 28 00:01:35,440 --> 00:01:38,200 to help you sleep, do you think that's been effective? 29 00:01:38,200 --> 00:01:39,920 It's been very effective. 30 00:01:39,920 --> 00:01:43,000 How do you think things have been in the last couple of days? 31 00:01:43,000 --> 00:01:45,200 Absolutely wonderful. 32 00:01:45,200 --> 00:01:48,840 I have now become... 33 00:01:50,760 --> 00:01:52,920 ..a happier person, 34 00:01:52,920 --> 00:01:57,880 because I've been getting what you would call real sleep. 35 00:01:59,840 --> 00:02:04,800 Sleep which has, today, enabled me to have a meal, 36 00:02:05,560 --> 00:02:09,680 which I haven't had in a long time, and really enjoying it. 37 00:02:09,680 --> 00:02:13,440 Mm. One of my favourites - chips. 38 00:02:14,840 --> 00:02:17,880 Egg and chips. Egg and chips, with vinegar. 39 00:02:20,080 --> 00:02:21,560 Wonderful. 40 00:02:21,560 --> 00:02:26,600 The fact that I shall be able to...die 41 00:02:28,440 --> 00:02:30,280 ..not feeling pain... 42 00:02:32,080 --> 00:02:35,720 ..I find it very...very helpful. 43 00:02:35,720 --> 00:02:39,600 So, you know that it's really about you letting go of life? 44 00:02:39,600 --> 00:02:41,640 Do you understand that one? Yes. Yes. 45 00:02:41,640 --> 00:02:44,600 So, there is something about preparing and then letting go, 46 00:02:44,600 --> 00:02:48,360 and then you go, rather than me doing something to make it happen. 47 00:02:48,360 --> 00:02:50,800 You understand that difference? Yes. 48 00:02:52,000 --> 00:02:53,840 Thank God for you. 49 00:02:53,840 --> 00:02:57,080 I don't have any fear of death now. 50 00:02:59,320 --> 00:03:03,000 The only thing I fear now is life. 51 00:03:04,400 --> 00:03:06,240 The only thing I'm looking forward to is... 52 00:03:08,080 --> 00:03:11,280 ..dying a...a happy death. OK. 53 00:03:12,840 --> 00:03:17,200 That's what I've been praying for, is a happy death. 54 00:03:19,440 --> 00:03:21,680 I feel gutted now that I won't be able to see this! 55 00:03:21,680 --> 00:03:23,760 AVRIL LAUGHS 56 00:03:23,760 --> 00:03:25,720 Yeah. 57 00:03:28,920 --> 00:03:30,400 John had a good Christmas, 58 00:03:30,400 --> 00:03:35,160 and then he slipped off, um...over about an 18-hour period. 59 00:03:35,160 --> 00:03:38,920 Largely, um...asleep or unconscious. 60 00:03:39,960 --> 00:03:42,360 So, it was a good letting go. 61 00:03:42,360 --> 00:03:46,240 And for his daughters, I think, very meaningful. 62 00:03:46,240 --> 00:03:50,480 It allowed the whole family to get to the same place at the same time, 63 00:03:50,480 --> 00:03:53,360 in terms of, "This is the end, and it's fine". 64 00:04:01,520 --> 00:04:04,160 However much we don't like to think about it, 65 00:04:04,160 --> 00:04:08,480 dying is something all of us will one day have to face. 66 00:04:08,480 --> 00:04:11,040 I'm a doctor, and I specialised in anaesthesia 67 00:04:11,040 --> 00:04:12,840 and intensive care medicine. 68 00:04:12,840 --> 00:04:14,280 And in this programme, 69 00:04:14,280 --> 00:04:18,000 I want to take a closer look at the ways we die. 70 00:04:18,000 --> 00:04:20,200 Despite everything that medicine can do, 71 00:04:20,200 --> 00:04:23,000 our lives don't always end the way we want them to. 72 00:04:23,000 --> 00:04:28,080 And even though only around 3% of us say we'd like to die in hospital, 73 00:04:28,160 --> 00:04:32,000 research suggests that more than half of us will. 74 00:04:32,000 --> 00:04:34,240 Death is a certainty, but until recently, 75 00:04:34,240 --> 00:04:36,400 medicine invested precious little effort 76 00:04:36,400 --> 00:04:39,680 in making sure that we got it right. 77 00:04:39,680 --> 00:04:43,720 And the vast majority of deaths aren't sudden or unexpected, 78 00:04:43,720 --> 00:04:45,720 and so there should be time. 79 00:04:45,720 --> 00:04:49,600 Time to prepare, time to make sure that we have a choice 80 00:04:49,600 --> 00:04:51,840 over how and where it happens. 81 00:04:53,520 --> 00:04:56,760 I've spent three months getting to know two institutions 82 00:04:56,760 --> 00:04:59,160 specialising in end-of-life care. 83 00:05:00,600 --> 00:05:03,560 I know I'm on a short wicket. 84 00:05:03,560 --> 00:05:07,280 I have worried about it, but then I say to myself, "What's the point?" 85 00:05:07,280 --> 00:05:11,560 On the way, I've met some inspirational people. 86 00:05:11,560 --> 00:05:16,640 I want to go out saying, "She was naughty to the end". 87 00:05:16,840 --> 00:05:19,840 I've had some of my long-held beliefs challenged. 88 00:05:19,840 --> 00:05:22,320 I'm confident now that I will get there. Yeah. 89 00:05:22,320 --> 00:05:25,560 And I've been looking for answers to some of the most difficult 90 00:05:25,560 --> 00:05:28,200 questions we'll ever have to face. 91 00:05:28,200 --> 00:05:30,720 Nearly everyone feels better afterwards 92 00:05:30,720 --> 00:05:33,280 for having had these frank conversations. 93 00:05:33,280 --> 00:05:37,400 When is the right time to stop aggressive medical treatments? 94 00:05:37,400 --> 00:05:41,640 I believe it's morally wrong to waste a dying person's time. 95 00:05:41,640 --> 00:05:44,880 And one of the easiest ways of wasting a dying person's time 96 00:05:44,880 --> 00:05:47,480 is to offer them treatments which you know jolly well 97 00:05:47,480 --> 00:05:49,360 are going to make very little difference. 98 00:05:49,360 --> 00:05:53,200 What are the alternatives to dying in hospital? 99 00:05:53,200 --> 00:05:55,280 I want to be at home when I die. 100 00:05:55,280 --> 00:05:58,680 Does a better death always have to mean a shorter life? 101 00:05:58,680 --> 00:06:01,600 There's quite a lot of evidence that in some circumstances, 102 00:06:01,600 --> 00:06:04,560 palliative care even improves people's quantity of life. 103 00:06:04,560 --> 00:06:07,400 And what offers the best quality of life... 104 00:06:09,040 --> 00:06:10,640 ..as we face death? 105 00:06:21,000 --> 00:06:24,800 Making this film, I made repeated visits to St Christopher's Hospice 106 00:06:24,800 --> 00:06:26,080 in South London. 107 00:06:27,720 --> 00:06:31,200 Here, I met people in the last days of their lives, 108 00:06:31,200 --> 00:06:35,440 along with the clinicians who continued to care for them. 109 00:06:35,440 --> 00:06:37,920 My name's Rob George, and I'm medical director 110 00:06:37,920 --> 00:06:39,920 at St Christopher's Hospice in London. 111 00:06:39,920 --> 00:06:45,000 It's very easy in this day and age to think that dying 112 00:06:45,840 --> 00:06:48,840 is all about the medicine and all about the treatments, 113 00:06:48,840 --> 00:06:50,560 when, in fact, it's not. 114 00:06:50,560 --> 00:06:54,960 Managing pain, managing symptoms are not that difficult. 115 00:06:54,960 --> 00:06:58,800 It's really the person leaving the life 116 00:06:58,800 --> 00:07:03,360 that is...the problem in hand. 117 00:07:03,360 --> 00:07:06,760 St Christopher's Hospice is a registered charity 118 00:07:06,760 --> 00:07:08,760 partly funded by the NHS. 119 00:07:10,160 --> 00:07:11,600 Hi, guys. 120 00:07:11,600 --> 00:07:14,240 Here, I met with people who are facing death... Hello, there! 121 00:07:14,240 --> 00:07:17,680 Hello! Hello, Barbara. Hi. How are you? 122 00:07:20,040 --> 00:07:21,400 ..like Barbara Elton. 123 00:07:21,400 --> 00:07:25,200 She has advanced cancer and needs help dealing with the symptoms. 124 00:07:26,720 --> 00:07:31,720 The first thing any of us want, I think, is the pain sorting. 125 00:07:32,520 --> 00:07:36,120 That is the major priority. 126 00:07:36,120 --> 00:07:38,960 "Please, please, please sort out my pain. 127 00:07:38,960 --> 00:07:41,880 "If you can't get rid of it, I understand, 128 00:07:41,880 --> 00:07:44,480 "but just sort it to the best you can. 129 00:07:45,640 --> 00:07:48,160 "The best of your ability." 130 00:07:48,160 --> 00:07:49,600 Which they did, and they did... 131 00:07:50,880 --> 00:07:52,800 ..really, really quickly. 132 00:07:52,800 --> 00:07:57,040 Until in the end, I was becoming the sort of pest of the ward. 133 00:07:57,040 --> 00:07:58,360 # Da-da-da-da-da. # 134 00:07:58,360 --> 00:08:00,320 All singing, all dancing. THEY LAUGH 135 00:08:00,320 --> 00:08:02,520 I was a total nightmare. 136 00:08:02,520 --> 00:08:04,960 A pest of the ward. 137 00:08:04,960 --> 00:08:08,520 I know you were really scared that hospices 138 00:08:08,520 --> 00:08:11,120 were about being tucked up in bed... Going in and never going out. 139 00:08:11,120 --> 00:08:12,720 Never going out. A one-way street. 140 00:08:12,720 --> 00:08:15,800 But the interesting thing is, you're planning to go home now, aren't you? 141 00:08:15,800 --> 00:08:18,200 Yes. Because I haven't given up yet. 142 00:08:18,200 --> 00:08:22,520 You've still got to face the prospect that you came in here and not ER... 143 00:08:24,360 --> 00:08:26,600 ..for a particular reason. 144 00:08:26,600 --> 00:08:29,000 And that is the reason you are... 145 00:08:29,000 --> 00:08:30,640 I shouldn't talk loudly, should I? 146 00:08:30,640 --> 00:08:33,000 You can talk as loud as you like, love. 147 00:08:33,000 --> 00:08:36,560 And that is the reason you are going to die. Mm. 148 00:08:36,560 --> 00:08:41,600 Now, that has fundamentally changed everything in my life. 149 00:08:42,560 --> 00:08:44,440 You're in a ward with... You're not on your own. 150 00:08:44,440 --> 00:08:46,080 No, no, no, no. There are people here. 151 00:08:46,080 --> 00:08:48,920 So, people around you here might themselves be dying. 152 00:08:48,920 --> 00:08:50,320 Has that been a problem for you? 153 00:08:50,320 --> 00:08:51,600 No. It's just... 154 00:08:53,160 --> 00:08:55,200 ..the natural course of things now. 155 00:08:55,200 --> 00:08:57,640 It might be me next, tonight. 156 00:08:57,640 --> 00:09:00,520 It could be me, it could be... 157 00:09:00,520 --> 00:09:02,960 I hope not, because you get favourites, don't you? 158 00:09:02,960 --> 00:09:06,240 It could be Margaret, it could...it could be any of us, 159 00:09:06,240 --> 00:09:09,640 but we expect...expect to go. 160 00:09:09,640 --> 00:09:12,120 Has this always been your attitude to death and dying? 161 00:09:12,120 --> 00:09:14,480 I've never given it any thought before. 162 00:09:14,480 --> 00:09:17,160 Now that you're here... Facing it. Yeah. 163 00:09:17,160 --> 00:09:20,800 One way or the other. Where are you in your thinking about it now? 164 00:09:20,800 --> 00:09:23,040 What do I think about it? 165 00:09:23,040 --> 00:09:25,680 Well, I certainly don't think, "When?" 166 00:09:25,680 --> 00:09:27,800 I certainly don't think, "Why?" 167 00:09:27,800 --> 00:09:30,520 Because that's obvious. 168 00:09:30,520 --> 00:09:32,960 I has to be thought about. 169 00:09:34,240 --> 00:09:38,320 Um... And why? I've got a dirty great lump there which explains. 170 00:09:42,160 --> 00:09:45,200 SOBS: But I still... 171 00:09:45,200 --> 00:09:47,200 Come here. Come here. 172 00:09:47,200 --> 00:09:48,760 Come here, come here. 173 00:09:48,760 --> 00:09:50,440 BARBARA SOBS UNCONTROLLABLY 174 00:09:51,680 --> 00:09:54,200 It's fine. It's all right, it's all right. 175 00:09:56,160 --> 00:09:58,040 It's all right. I still don't want to go. 176 00:09:58,040 --> 00:10:01,040 Well, you're not going anywhere, apart from home with me. 177 00:10:01,040 --> 00:10:03,080 Aren't you? For...for the short-term. 178 00:10:03,080 --> 00:10:05,520 Yeah? I suppose so, yes. 179 00:10:05,520 --> 00:10:07,320 Yeah? So, you're coming home, aren't you? 180 00:10:07,320 --> 00:10:08,960 Yes, and I'm so embarrassed. 181 00:10:08,960 --> 00:10:11,560 Please don't be embarrassed. Don't be silly. 182 00:10:11,560 --> 00:10:13,400 You're all right. 183 00:10:13,400 --> 00:10:16,280 The majority of deaths are relatively straightforward. 184 00:10:16,280 --> 00:10:21,360 They're not sudden and dramatic and filled with horror. 185 00:10:21,360 --> 00:10:25,360 It's about the biography, not the biology. 186 00:10:25,360 --> 00:10:28,240 By and large, once people have engaged with it 187 00:10:28,240 --> 00:10:32,280 and understand what's happening, it's an easy process. 188 00:10:32,280 --> 00:10:34,560 But it's only an easy process 189 00:10:34,560 --> 00:10:38,800 if somebody has resolved, er...their relationships, 190 00:10:38,800 --> 00:10:41,040 completed their tasks, 191 00:10:41,040 --> 00:10:45,920 and are thinking about their preparations, 192 00:10:45,920 --> 00:10:48,240 they're saying their goodbyes and their sorrys 193 00:10:48,240 --> 00:10:49,760 and their thank yous, 194 00:10:49,760 --> 00:10:53,040 and have decided what kind of meaning they want to attach 195 00:10:53,040 --> 00:10:54,600 to the life they've led, 196 00:10:54,600 --> 00:10:57,120 and whether there's anything beyond the grave. 197 00:10:59,000 --> 00:11:01,600 In our acute hospitals and emergency wards, 198 00:11:01,600 --> 00:11:05,200 medicine is rightly focused on how best to try and treat disease 199 00:11:05,200 --> 00:11:07,280 and cheat death. 200 00:11:07,280 --> 00:11:11,320 Advances in medicine mean we're actually quite good at this. 201 00:11:11,320 --> 00:11:13,520 There's your detail. 202 00:11:16,760 --> 00:11:19,040 Part of the time, I work for Kent, Surrey and Sussex 203 00:11:19,040 --> 00:11:21,840 Helicopter Emergency Medical Service. 204 00:11:24,520 --> 00:11:28,520 This job is about bringing the right care to the severely-injured patient 205 00:11:28,520 --> 00:11:29,880 as quickly as possible, 206 00:11:29,880 --> 00:11:32,160 to ensure the best chance of survival. 207 00:11:33,840 --> 00:11:37,680 Slide. And we're going to go to the patient's left, this way. 208 00:11:37,680 --> 00:11:41,560 And once in the hospital, this endeavour continues. 209 00:11:41,560 --> 00:11:43,640 A nice big deep breath. 210 00:11:43,640 --> 00:11:45,240 MACHINES BEEP 211 00:11:47,240 --> 00:11:49,360 So, this is our resus bay. 212 00:11:49,360 --> 00:11:51,440 There are six bays here, 213 00:11:51,440 --> 00:11:54,040 where we receive the sickest patients in the hospital. 214 00:11:54,040 --> 00:11:57,800 They park in this bay over here, which has everything you really need 215 00:11:57,800 --> 00:12:01,040 for a bit of life support, a bit of resuscitation. 216 00:12:01,040 --> 00:12:03,680 That should cover us. 217 00:12:03,680 --> 00:12:08,600 That's through the cord and it's at the incisors at 22, coming out. 218 00:12:08,600 --> 00:12:12,040 There's not a lot that you can't do here, with this equipment, 219 00:12:12,040 --> 00:12:15,920 but just because you can, it doesn't always mean you should. 220 00:12:15,920 --> 00:12:19,360 And that's where the decisions get a little bit complicated at times. 221 00:12:19,360 --> 00:12:23,120 Doctors, who spend their lives treating critically-ill patients, 222 00:12:23,120 --> 00:12:27,280 have a difficult balance to strike, and it's never easy. 223 00:12:27,280 --> 00:12:31,760 Nothing is black and white. It's all shades of grey. 224 00:12:31,760 --> 00:12:35,360 But when it comes to considering ourselves as patients, 225 00:12:35,360 --> 00:12:37,840 it's interesting to ask what we would want. 226 00:12:40,080 --> 00:12:43,040 I've gathered some of my colleagues from intensive care 227 00:12:43,040 --> 00:12:44,880 to get their thoughts. 228 00:12:44,880 --> 00:12:46,520 I remember standing at the end of the bed, 229 00:12:46,520 --> 00:12:49,440 you know, in intensive care, looking at a patient, 230 00:12:49,440 --> 00:12:51,880 thinking about what I would want if I were in their position. 231 00:12:51,880 --> 00:12:53,880 That's really hard. 232 00:12:53,880 --> 00:12:56,480 To what extent have you thought about that yourself, 233 00:12:56,480 --> 00:13:00,560 what you would want for yourself in that situation? 234 00:13:00,560 --> 00:13:03,840 Well, I've given my husband quite strict instructions... 235 00:13:03,840 --> 00:13:06,120 THEY LAUGH ..for what I wouldn't want. 236 00:13:06,120 --> 00:13:08,520 What are those things? What are those instructions? 237 00:13:08,520 --> 00:13:10,600 Er...minimal. THEY LAUGH 238 00:13:10,600 --> 00:13:12,200 There's, er... Yeah. 239 00:13:12,200 --> 00:13:15,840 Minimal? Yeah, to do, yeah. I've, um... 240 00:13:15,840 --> 00:13:19,240 Unless there was something very acutely reversible 241 00:13:19,240 --> 00:13:22,560 that it was clear why I ended up in ITU, 242 00:13:22,560 --> 00:13:24,240 then to...to let me go. 243 00:13:24,240 --> 00:13:26,760 So, if it was a short, sharp, reversible illness, 244 00:13:26,760 --> 00:13:28,440 you're happy to go all-out? Yeah. 245 00:13:28,440 --> 00:13:31,640 But anything more chronic or drawn-out... 48 hours, max. 246 00:13:31,640 --> 00:13:33,680 48 hours, max? Yeah. 247 00:13:33,680 --> 00:13:35,040 I'm scared of dying. 248 00:13:35,040 --> 00:13:37,320 I don't want to be in pain, I don't want to suffer. 249 00:13:37,320 --> 00:13:38,600 I want it to be quick. 250 00:13:38,600 --> 00:13:41,800 I would not want to undergo a prolonged period 251 00:13:41,800 --> 00:13:44,680 of unpleasant intervention on intensive care 252 00:13:44,680 --> 00:13:47,720 unless there was a reasonable expectation 253 00:13:47,720 --> 00:13:51,480 that I could get back to something at least approaching 254 00:13:51,480 --> 00:13:55,640 the sort of lifestyle that I had before I went into hospital. 255 00:13:55,640 --> 00:13:59,160 You go into this profession to make people better. 256 00:13:59,160 --> 00:14:03,160 That's the sort of real reason you want to go into looking after people. 257 00:14:03,160 --> 00:14:07,120 And people dying, almost, for me, 258 00:14:07,120 --> 00:14:09,800 it took a long time to resolve in my mind 259 00:14:09,800 --> 00:14:14,360 that a patient passing away wasn't a failure. 260 00:14:14,360 --> 00:14:17,560 Doctors who want to do good often think that the good being done 261 00:14:17,560 --> 00:14:19,520 is by doing something. 262 00:14:19,520 --> 00:14:23,480 And in effect, they're subjecting us all to death 263 00:14:23,480 --> 00:14:25,400 by a thousand cuts. 264 00:14:25,400 --> 00:14:27,840 Because we are all dying, 265 00:14:27,840 --> 00:14:29,560 we are all going to die, 266 00:14:29,560 --> 00:14:34,000 and the question is whether or not medicine is going to help or hinder 267 00:14:34,000 --> 00:14:36,920 the quality of that passing. 268 00:14:36,920 --> 00:14:39,840 Just to have treatments because they're available 269 00:14:39,840 --> 00:14:43,160 can end up being the worst of all worlds. 270 00:14:44,600 --> 00:14:47,960 But stopping treatments doesn't have to mean giving up. 271 00:14:47,960 --> 00:14:51,400 There's a whole field of medicine with doctors who are experts 272 00:14:51,400 --> 00:14:54,120 at helping people at the end of life. 273 00:14:54,120 --> 00:14:56,400 It's called palliative care. 274 00:15:01,040 --> 00:15:03,080 The Velindre Hospital in Cardiff is a trust 275 00:15:03,080 --> 00:15:06,040 with its own dedicated palliative-care team. 276 00:15:09,680 --> 00:15:13,440 My name is Mark Taubert, I'm a palliative-care consultant, 277 00:15:13,440 --> 00:15:17,280 and I work in Velindre Cancer Centre. 278 00:15:17,280 --> 00:15:21,160 Part of palliative care is really about improving people's symptoms. 279 00:15:21,160 --> 00:15:25,640 Problems like pain, nausea, vomiting, breathlessness. 280 00:15:25,640 --> 00:15:28,960 So, palliative care is about improving the situation 281 00:15:28,960 --> 00:15:33,120 for an individual that is faced with a very frightening prospect. 282 00:15:33,120 --> 00:15:35,840 And we, as a speciality of palliative care, 283 00:15:35,840 --> 00:15:39,040 have a lot of no-nonsense, frank conversations 284 00:15:39,040 --> 00:15:41,040 that might revolve around 285 00:15:41,040 --> 00:15:44,120 what expectations an individual might have 286 00:15:44,120 --> 00:15:48,480 and how they would see themselves towards the end of life. 287 00:15:48,480 --> 00:15:51,600 But nearly always, when I've sat in a clinic with someone, 288 00:15:51,600 --> 00:15:53,240 or I've sat on a ward with someone, 289 00:15:53,240 --> 00:15:55,920 and we've had a really deep and meaningful conversation 290 00:15:55,920 --> 00:15:57,680 about the future, about wishes, about views, 291 00:15:57,680 --> 00:15:59,920 about certain interventions, 292 00:15:59,920 --> 00:16:02,600 nearly everyone feels better afterwards 293 00:16:02,600 --> 00:16:05,000 for having had these frank conversations. 294 00:16:06,440 --> 00:16:09,280 Mark is taking me to see a patient who has recently discovered 295 00:16:09,280 --> 00:16:11,920 that her illness is terminal, 296 00:16:11,920 --> 00:16:14,960 and she's now faced with some crucial decisions. 297 00:16:17,320 --> 00:16:20,880 Sandra needs to decide if she should ask her doctors 298 00:16:20,880 --> 00:16:23,920 to focus on intensive treatment of her cancer 299 00:16:23,920 --> 00:16:26,160 or on a better quality of life. 300 00:16:26,160 --> 00:16:31,200 I sometimes find it a challenge bringing up the topic of... 301 00:16:31,640 --> 00:16:33,360 When you're faced with your own death 302 00:16:33,360 --> 00:16:35,960 and when you're faced with dying, 303 00:16:35,960 --> 00:16:38,320 a lot of people don't want to talk about that. No. 304 00:16:38,320 --> 00:16:41,040 A lot of people feel very sensitive and feel it's in bad taste. 305 00:16:41,040 --> 00:16:42,800 It's understandable, because, I mean, 306 00:16:42,800 --> 00:16:45,440 it's something that none of us want to hear. Mm. 307 00:16:45,440 --> 00:16:47,280 As you say, it's not easy. 308 00:16:47,280 --> 00:16:50,760 I wasn't going to tell my son yesterday, but when he came down, 309 00:16:50,760 --> 00:16:54,040 I thought, "Well, I have to tell him at some time, 310 00:16:54,040 --> 00:16:57,200 "so sooner rather than later," so I told him then. 311 00:16:58,440 --> 00:17:00,240 Sandra's cancer is advanced, 312 00:17:00,240 --> 00:17:04,920 and the chemotherapy she's been having has failed to keep it at bay. 313 00:17:06,840 --> 00:17:09,560 She needs to consider whether pursuing intensive treatment 314 00:17:09,560 --> 00:17:12,280 is the right thing to do. 315 00:17:12,280 --> 00:17:16,760 One of the things we hope to be able to do in palliative care, 316 00:17:16,760 --> 00:17:20,120 and when we continue seeing you, as well, 317 00:17:20,120 --> 00:17:23,040 is help you in some of the tougher decisions. 318 00:17:23,040 --> 00:17:27,120 Many treatments and many interventions are on offer, 319 00:17:27,120 --> 00:17:30,760 and some can be very effective and some can help, 320 00:17:30,760 --> 00:17:33,400 but some come with drawbacks as well, with side-effects, 321 00:17:33,400 --> 00:17:35,840 and require hospital admissions. 322 00:17:35,840 --> 00:17:39,520 And you may sometimes nearly feel duty-bound 323 00:17:39,520 --> 00:17:42,760 to go ahead with the treatments, whatever the cost. 324 00:17:42,760 --> 00:17:46,320 But I think what we'd like to try and do is 325 00:17:46,320 --> 00:17:49,800 explain the different options, the pros, the cons, 326 00:17:49,800 --> 00:17:51,280 and then help you make a decision. 327 00:17:51,280 --> 00:17:53,440 That's... Is that further along the line, or...? 328 00:17:53,440 --> 00:17:55,920 At any point. Any point. At any point. 329 00:17:55,920 --> 00:17:58,960 And that goes for chemotherapy treatments, 330 00:17:58,960 --> 00:18:00,640 that goes for radiotherapy treatments. 331 00:18:00,640 --> 00:18:03,040 We're happy to support you through all of those, 332 00:18:03,040 --> 00:18:05,200 but equally, sometimes people say, 333 00:18:05,200 --> 00:18:07,880 "Look, I feel awkward to say this to the doctors, 334 00:18:07,880 --> 00:18:09,560 "but enough is enough and..." Yes. 335 00:18:09,560 --> 00:18:11,560 "..this is one treatment I don't want to happen. 336 00:18:11,560 --> 00:18:13,600 "I want to refuse this treatment." 337 00:18:13,600 --> 00:18:16,200 And I can do that and still not be, 338 00:18:16,200 --> 00:18:18,680 you know, penalised in any way? 339 00:18:18,680 --> 00:18:20,320 No. No. No, not at all. 340 00:18:20,320 --> 00:18:23,480 If they're not too invasive, I don't mind trying them, 341 00:18:23,480 --> 00:18:27,840 but if they're very invasive, and it's sort of, 60/40, 342 00:18:27,840 --> 00:18:29,720 I'd probably say no. 343 00:18:29,720 --> 00:18:31,440 Mm-hm. 344 00:18:31,440 --> 00:18:33,320 Sandra's dilemma is not uncommon, 345 00:18:33,320 --> 00:18:35,560 but for many of us, as doctors, 346 00:18:35,560 --> 00:18:38,600 it's often easier to do what we know best, 347 00:18:38,600 --> 00:18:41,240 what our core training was geared towards, 348 00:18:41,240 --> 00:18:45,080 to continue treatment in pursuit of cure. 349 00:18:45,080 --> 00:18:48,560 In a sense, with the way that modern medicine is going, 350 00:18:48,560 --> 00:18:51,840 we've got a big problem here that we're not fixing. 351 00:18:51,840 --> 00:18:54,080 It's very easy to give the big treatments 352 00:18:54,080 --> 00:18:58,560 and to just slot into this sort of conveyor belt of big treatments. 353 00:18:58,560 --> 00:19:02,360 Having a conversation about what might be if you don't have Treatment A, 354 00:19:02,360 --> 00:19:06,240 but may opt for other approaches, including palliative care, 355 00:19:06,240 --> 00:19:08,880 is a longer conversation, 356 00:19:08,880 --> 00:19:10,520 it's a more complex conversation. 357 00:19:10,520 --> 00:19:14,680 And that's why, I think, people nowadays still default always to Treatment A, 358 00:19:14,680 --> 00:19:18,280 the thing they're used to prescribing, or giving, cos it's just easier. 359 00:19:18,280 --> 00:19:22,440 It's always easier, as a clinician, to do something that feels active, 360 00:19:22,440 --> 00:19:25,880 to feel like you're treating a patient 361 00:19:25,880 --> 00:19:28,360 for a medical entity actively, 362 00:19:28,360 --> 00:19:31,640 and actually, that point at which you are being gentler 363 00:19:31,640 --> 00:19:34,040 makes things much more complicated... 364 00:19:34,040 --> 00:19:36,280 Yes. ..in many dimensions. 365 00:19:36,280 --> 00:19:39,560 And when I say to them that someone I knew in a similar situation 366 00:19:39,560 --> 00:19:42,560 opted out of all chemotherapy, opted out of all radiotherapy, 367 00:19:42,560 --> 00:19:45,800 but had good, active palliative care 368 00:19:45,800 --> 00:19:50,480 and had a very comfortable remainder of their life, 369 00:19:50,480 --> 00:19:52,720 they're often quite surprised. 370 00:19:56,720 --> 00:20:00,040 It's impressive, really, to watch Mark have a conversation like that 371 00:20:00,040 --> 00:20:03,680 and tackle the issues head-on without dancing around the subject. 372 00:20:03,680 --> 00:20:06,920 And through that, I think, he empowers the patients. 373 00:20:06,920 --> 00:20:10,760 He gives some choices, he makes them understand what they can choose, 374 00:20:10,760 --> 00:20:12,920 and makes them focus on what's important, 375 00:20:12,920 --> 00:20:17,120 which is the quality, as well as the quantity of their lives. 376 00:20:18,960 --> 00:20:23,000 So, how well-established is this approach to care? 377 00:20:23,000 --> 00:20:26,040 I've come to the Cicely Saunders Institute 378 00:20:26,040 --> 00:20:29,320 to talk to a doctor who specialises in palliative care, 379 00:20:29,320 --> 00:20:31,720 Dr Katherine Sleeman. 380 00:20:33,360 --> 00:20:36,200 I do remember those times when we were both at medical school together. 381 00:20:36,200 --> 00:20:38,440 Just paint me a picture of how much 382 00:20:38,440 --> 00:20:41,000 the art of palliative care has changed 383 00:20:41,000 --> 00:20:44,520 since you and I finished medical school 20 years ago. 384 00:20:44,520 --> 00:20:48,120 Looking back, I'm quite ashamed, actually, 385 00:20:48,120 --> 00:20:52,040 of some of the errors I made as a junior doctor. 386 00:20:52,040 --> 00:20:54,680 When I left medical school, 387 00:20:54,680 --> 00:20:57,560 I wasn't even aware 388 00:20:57,560 --> 00:21:00,600 that looking after patients who were dying 389 00:21:00,600 --> 00:21:02,640 was going to be part of my job as a doctor. 390 00:21:02,640 --> 00:21:05,880 As bizarre as that sounds, there was just no priority on it. 391 00:21:05,880 --> 00:21:10,880 And nowadays, it's probably only about 20 hours of teaching 392 00:21:11,080 --> 00:21:13,160 over a five-year medical-school curriculum. 393 00:21:13,160 --> 00:21:15,960 Which, I think, is not enough. 394 00:21:15,960 --> 00:21:19,080 Medical students are kind of whisked past 395 00:21:19,080 --> 00:21:23,360 the beds of people dying from ordinary diseases 396 00:21:23,360 --> 00:21:26,600 in order to see a once-in-a-lifetime clinical sign. 397 00:21:26,600 --> 00:21:28,800 It's not a rare occurrence that a junior doctor 398 00:21:28,800 --> 00:21:31,080 will need to look after someone who's dying. 399 00:21:31,080 --> 00:21:33,400 And remember, we're not just thinking about 400 00:21:33,400 --> 00:21:35,280 the last hours or days of life. 401 00:21:35,280 --> 00:21:37,840 The average person who dies in this country 402 00:21:37,840 --> 00:21:42,240 spends around 30 days of their last year of life in hospital. 403 00:21:42,240 --> 00:21:45,040 They're on cardiology wards and orthopaedic wards. 404 00:21:45,040 --> 00:21:49,160 The fact is that all doctors will look after these patients. 405 00:21:49,160 --> 00:21:52,280 It is possible to have a good death in hospital. 406 00:21:52,280 --> 00:21:55,560 However, that's not where most people want to be. 407 00:21:55,560 --> 00:21:58,200 But if not there, then where? 408 00:21:58,200 --> 00:22:02,760 # Nellie the elephant packed her trunk and said goodbye to the circus 409 00:22:02,760 --> 00:22:05,160 # Off she went with a trumpety-trump 410 00:22:05,160 --> 00:22:07,480 # Trump, trump, trump. # 411 00:22:12,960 --> 00:22:15,920 One place that people can turn to at the end of their lives 412 00:22:15,920 --> 00:22:17,320 is a hospice. 413 00:22:20,000 --> 00:22:22,600 Visiting St Christopher's immediately reveals 414 00:22:22,600 --> 00:22:25,760 these places aren't what we may think they are. 415 00:22:28,200 --> 00:22:30,840 I come once a week. 416 00:22:30,840 --> 00:22:36,000 I have my hair done, my nails cut. 417 00:22:39,520 --> 00:22:43,760 As long as people want to see you, you're OK. 418 00:22:45,800 --> 00:22:48,240 If they don't, you're stuffed. 419 00:22:50,080 --> 00:22:52,480 I shouldn't have said that, should I? 420 00:22:52,480 --> 00:22:56,160 I'm still naughty, you see. Yeah. 421 00:22:56,160 --> 00:22:58,560 After all these years. 422 00:22:58,560 --> 00:23:02,640 I want to go out saying, "She was naughty to the end". 423 00:23:04,800 --> 00:23:07,200 I mean, I don't know what people think hospices are about, 424 00:23:07,200 --> 00:23:09,720 but essentially speaking, this is a place for living 425 00:23:09,720 --> 00:23:12,880 and getting the most out of life that you can. 426 00:23:12,880 --> 00:23:17,200 So, the proposition is that you live until you die. 427 00:23:17,200 --> 00:23:20,040 So, it's kind of about concluding lives 428 00:23:20,040 --> 00:23:24,640 and it's getting the maximum out of what remains. 429 00:23:24,640 --> 00:23:27,560 That's the first thing, isn't it, that everyone... 430 00:23:27,560 --> 00:23:30,120 You say hospice, and you do the word-association game, 431 00:23:30,120 --> 00:23:33,480 and the word association is death and dying. Yeah. 432 00:23:33,480 --> 00:23:36,160 I kind of talk about decision space. 433 00:23:36,160 --> 00:23:40,240 So, I talk about getting the physical stuff out of the way 434 00:23:40,240 --> 00:23:43,080 so that people can deal with concluding their lives. 435 00:23:43,080 --> 00:23:45,160 Because dying's not about dying from a disease, 436 00:23:45,160 --> 00:23:46,920 it's about dying from a life. 437 00:23:46,920 --> 00:23:49,040 The real issue is, 438 00:23:49,040 --> 00:23:52,320 "Can I get meaning and can I get conclusion 439 00:23:52,320 --> 00:23:55,920 "and can I get resolution out of this life?" 440 00:23:57,600 --> 00:24:00,560 Here is what we call the Anniversary Centre. 441 00:24:00,560 --> 00:24:04,400 And so, this is as much for families and relatives and friends, 442 00:24:04,400 --> 00:24:07,240 as it is for the people themselves who are dying. 443 00:24:07,240 --> 00:24:08,480 # Gone are the dark...# 444 00:24:08,480 --> 00:24:11,920 Would you like a drink, sir? A tea would be lovely. Thank you. 445 00:24:13,160 --> 00:24:15,320 # It's going to be a bright Bright 446 00:24:15,320 --> 00:24:18,920 # Bright, sun-shiny day...# 447 00:24:18,920 --> 00:24:22,520 One of the surprising things about hospices 448 00:24:22,520 --> 00:24:25,720 is that most of their patients are outpatients. 449 00:24:28,600 --> 00:24:30,640 We'll let you know when the film goes out. Thank you. 450 00:24:30,640 --> 00:24:33,080 Probably be next year. 451 00:24:33,080 --> 00:24:36,680 Oh, good grief! It'd better not be before I'm dead. 452 00:24:36,680 --> 00:24:38,440 INTERVIEWER LAUGHS 453 00:24:38,440 --> 00:24:41,360 You'd better get it out a bit quicker than that. 454 00:24:45,520 --> 00:24:48,640 People think of hospices as places to die, 455 00:24:48,640 --> 00:24:51,560 but for Rob, the opposite is true. 456 00:24:51,560 --> 00:24:54,000 For him, they're places to live. 457 00:24:54,000 --> 00:24:56,640 So, if we go down here, 458 00:24:56,640 --> 00:24:59,480 the next thing that's really important 459 00:24:59,480 --> 00:25:02,880 is to rehabilitate and re-enable people. 460 00:25:02,880 --> 00:25:06,320 So, it might surprise you to know that... 461 00:25:06,320 --> 00:25:08,080 There's a gym. 462 00:25:09,200 --> 00:25:11,600 Despite having chronic lung disease, 463 00:25:11,600 --> 00:25:15,000 Michael McGee is determined to keep himself active. 464 00:25:16,520 --> 00:25:21,480 So, this gymnasium is helping me gain my breath. 465 00:25:21,480 --> 00:25:23,640 I've got to take it relatively easily. 466 00:25:23,640 --> 00:25:27,840 I mean, I can't do a four-minute mile, for example. Um... 467 00:25:29,560 --> 00:25:32,360 I mean, you can see, I'm not going very fast and I can't go very fast. 468 00:25:34,200 --> 00:25:36,040 I come here on a Wednesday. 469 00:25:36,040 --> 00:25:39,480 First of all, it gives me a bit of breathing space from my wife. 470 00:25:39,480 --> 00:25:44,440 Secondly, I'm a bit of a pain being under her feet all the time. 471 00:25:44,440 --> 00:25:48,000 You get a nice meal in there, all for about a fiver. 472 00:25:48,000 --> 00:25:50,000 A meal and a pud. Not bad. 473 00:25:50,000 --> 00:25:52,280 You also get a glass of wine. 474 00:25:54,280 --> 00:25:57,120 When I think about the future, um... 475 00:25:59,200 --> 00:26:03,080 I know I'm on a short...short wicket. Mm-hm. 476 00:26:03,080 --> 00:26:05,480 I do... I have worried about it, 477 00:26:05,480 --> 00:26:07,880 but then I say to myself, "What's the point?" 478 00:26:07,880 --> 00:26:11,520 We've all got to have our end to our life, but, um... 479 00:26:13,080 --> 00:26:15,200 I suppose I can put a smile on my face. 480 00:26:16,880 --> 00:26:20,360 There are around 200 hospices in the UK. 481 00:26:20,360 --> 00:26:24,560 The care and attention they're able to deliver is clearly excellent. 482 00:26:24,560 --> 00:26:29,440 But improvements in care usually come at a cost. 483 00:26:29,440 --> 00:26:33,880 In terms of the health economics of palliative-care provision, 484 00:26:33,880 --> 00:26:36,120 there is now emerging evidence 485 00:26:36,120 --> 00:26:38,480 that palliative care services 486 00:26:38,480 --> 00:26:42,760 are either cost-effective or cost-neutral. 487 00:26:42,760 --> 00:26:45,920 So, they provide good value for money. 488 00:26:45,920 --> 00:26:49,400 There's also evidence that palliative-care provision 489 00:26:49,400 --> 00:26:52,720 early in someone's admission to hospital 490 00:26:52,720 --> 00:26:55,920 is more cost-effective than providing it later. 491 00:26:55,920 --> 00:26:58,000 So, people who got palliative-care input 492 00:26:58,000 --> 00:27:00,560 within a few days of their admission to hospital 493 00:27:00,560 --> 00:27:03,560 had, overall, much lower costs than those people 494 00:27:03,560 --> 00:27:06,480 who had palliative care provided a little bit later. 495 00:27:06,480 --> 00:27:10,880 There's also evidence palliative care is particularly cost-effective 496 00:27:10,880 --> 00:27:14,080 for people who have multiple medical conditions. 497 00:27:15,960 --> 00:27:19,840 And so there's a body of research that suggests that palliative care 498 00:27:19,840 --> 00:27:23,080 might be one of those rare things in all of medicine 499 00:27:23,080 --> 00:27:26,960 which is both better for our patients and more cost-effective. 500 00:27:30,200 --> 00:27:32,640 William Willoughby has just spent time in hospital 501 00:27:32,640 --> 00:27:35,640 before being transferred to St Christopher's. 502 00:27:39,000 --> 00:27:42,360 It's a different experience, being in hospital, 503 00:27:42,360 --> 00:27:44,360 than it is in a hospice. 504 00:27:44,360 --> 00:27:45,840 Not that the... 505 00:27:45,840 --> 00:27:50,400 feeling of care was lacking, necessarily, in the hospital, 506 00:27:50,400 --> 00:27:52,880 but it's far greater here. 507 00:27:52,880 --> 00:27:57,600 There is a sort of understanding of the needs of the patient. 508 00:27:57,600 --> 00:27:59,840 Whereas in hospital, 509 00:27:59,840 --> 00:28:04,760 I found that everything was very hectic. 510 00:28:04,760 --> 00:28:08,240 People didn't have enough time, 511 00:28:08,240 --> 00:28:12,240 because there were so many things going on at once. 512 00:28:12,240 --> 00:28:15,080 The challenge of looking after people who are dying in hospital 513 00:28:15,080 --> 00:28:17,600 is that hospitals are essentially there 514 00:28:17,600 --> 00:28:20,240 for the reversing of reversible disease. 515 00:28:20,240 --> 00:28:25,000 So, when it comes to accepting or recognising that somebody's dying, 516 00:28:25,000 --> 00:28:28,040 the setting is not quite right. 517 00:28:28,040 --> 00:28:31,760 Our emphasis, the services that most hospices provide, 518 00:28:31,760 --> 00:28:35,560 is on the life that is being left. 519 00:28:35,560 --> 00:28:38,600 The life that somebody's leaving, 520 00:28:38,600 --> 00:28:40,640 the life they're letting go of, 521 00:28:40,640 --> 00:28:42,880 the life they're completing. 522 00:28:44,320 --> 00:28:48,360 But hospices are still not where most people want to die. 523 00:28:50,640 --> 00:28:53,680 The majority of us want to spend the last moments of our lives 524 00:28:53,680 --> 00:28:55,680 in our own homes. 525 00:28:57,000 --> 00:29:00,760 Well, I'm due to go home, 526 00:29:00,760 --> 00:29:03,240 er...in a few days' time. 527 00:29:03,240 --> 00:29:06,320 Er...so...er... 528 00:29:07,680 --> 00:29:10,560 I'll be glad to get back home, of course. 529 00:29:10,560 --> 00:29:13,680 I've been involved with St Christopher's for quite a while, 530 00:29:13,680 --> 00:29:17,600 because my wife died two years ago, 531 00:29:17,600 --> 00:29:20,840 and in her closing stages, 532 00:29:20,840 --> 00:29:25,880 we had St Christopher's come in to give her care. 533 00:29:26,160 --> 00:29:30,080 And they...they were...they were first class. 534 00:29:30,080 --> 00:29:32,480 They were first class. Yes. 535 00:29:32,480 --> 00:29:35,680 They couldn't have been more considerate, more gentle, 536 00:29:35,680 --> 00:29:37,680 and they were...they were... 537 00:29:39,080 --> 00:29:42,320 They made it...they made it easy for her to go. 538 00:29:43,400 --> 00:29:45,480 And she died at home? Yes. 539 00:29:45,480 --> 00:29:49,760 Is that something that was important to her? Yes. Yes. 540 00:29:49,760 --> 00:29:53,160 And it's going to be something important to me, if I can make it. 541 00:29:56,200 --> 00:29:58,840 Evidence shows that having palliative care at home 542 00:29:58,840 --> 00:30:00,960 helps to increase the chances 543 00:30:00,960 --> 00:30:03,160 that you can stay there until the end. 544 00:30:04,560 --> 00:30:06,600 One of St Christopher's consultant nurses 545 00:30:06,600 --> 00:30:10,000 who works out in the community is Nigel Dodds. 546 00:30:10,000 --> 00:30:13,680 Tell me a bit about the lady that we're going to see now, Nigel. 547 00:30:13,680 --> 00:30:17,080 Brenda is a 71-year-old woman 548 00:30:17,080 --> 00:30:20,600 with, um...metastatic breast cancer. 549 00:30:20,600 --> 00:30:25,520 She lives with her husband, Max, in Peckham. 550 00:30:25,920 --> 00:30:30,960 She, um...has ultimately come to the end of all her treatment 551 00:30:31,520 --> 00:30:35,640 and the plan is just to keep her at home for as long as possible, 552 00:30:35,640 --> 00:30:38,520 um...keep her as comfortable as possible. 553 00:30:40,520 --> 00:30:43,560 So, Brenda, obviously, I can see that you're looking brighter 554 00:30:43,560 --> 00:30:45,360 than when I saw you the last time. Yes. 555 00:30:45,360 --> 00:30:47,400 And your breathing's better, as well. 556 00:30:47,400 --> 00:30:49,040 Yeah, a lot better. 557 00:30:49,040 --> 00:30:50,840 And how's your appetite? 558 00:30:50,840 --> 00:30:52,720 Not that great. Right. 559 00:30:52,720 --> 00:30:55,720 I'd like a bit of steak, but I don't think I could chew it. 560 00:30:55,720 --> 00:30:56,760 NIGEL LAUGHS 561 00:30:57,720 --> 00:31:01,200 When someone first suggested that the palliative-care team 562 00:31:01,200 --> 00:31:04,080 come and see you, how did you feel about that? 563 00:31:04,080 --> 00:31:06,680 Did that worry you, or...? Frightened. Frightened? Yeah. 564 00:31:06,680 --> 00:31:08,840 Because what did you associate us with? 565 00:31:10,600 --> 00:31:12,600 Death, I suppose. Right. 566 00:31:12,600 --> 00:31:15,560 That is frightening. Yeah. 567 00:31:15,560 --> 00:31:18,720 But do you think that talking about the things that worry you 568 00:31:18,720 --> 00:31:22,480 has, in some way, helped to make you feel less worried? Yeah, definitely. 569 00:31:22,480 --> 00:31:24,160 Yeah, definitely. Yeah. 570 00:31:25,600 --> 00:31:28,120 That would be how I see it, anyway. Yeah. 571 00:31:29,640 --> 00:31:32,480 Brenda, when you were at Guy's and you saw the doctors and they said, 572 00:31:32,480 --> 00:31:35,760 "Maybe it's time to think about stopping the treatment, 573 00:31:35,760 --> 00:31:39,080 "stopping the chemotherapy", what was that like? 574 00:31:39,080 --> 00:31:40,600 A relief. 575 00:31:41,880 --> 00:31:46,720 Because that chemo was making me feel so, so, so ill. 576 00:31:46,720 --> 00:31:49,040 I was glad to get rid of it. 577 00:31:49,040 --> 00:31:51,000 Yeah, it was making me agitated. 578 00:31:51,000 --> 00:31:52,840 Yeah, you were very agitated. 579 00:31:52,840 --> 00:31:56,480 And what was that decision like to take, to...? 580 00:31:56,480 --> 00:31:59,080 Once I'd made up my mind, it was all right. 581 00:32:00,560 --> 00:32:02,880 I don't go to bed and think about it. 582 00:32:02,880 --> 00:32:04,600 Because you were before, weren't you? 583 00:32:04,600 --> 00:32:06,280 Yeah, terrible. Yeah. 584 00:32:06,280 --> 00:32:09,240 But not now. I don't think about it. 585 00:32:09,240 --> 00:32:13,560 Why do you think you're feeling differently about your future? 586 00:32:13,560 --> 00:32:16,560 Because I've accepted the fact that I'm dying. Right. 587 00:32:17,800 --> 00:32:20,040 There's no getting away from it. 588 00:32:21,440 --> 00:32:23,360 You just feel more peaceful about that. 589 00:32:23,360 --> 00:32:25,520 Yeah, I do feel more peaceful about it. 590 00:32:25,520 --> 00:32:27,480 Mm-hm. I can see that. 591 00:32:27,480 --> 00:32:29,520 You...you look totally different. 592 00:32:30,760 --> 00:32:33,440 I've had my hair cut. NIGEL CHUCKLES 593 00:32:33,440 --> 00:32:36,120 He did it yesterday. Yeah. 594 00:32:36,120 --> 00:32:39,320 No, I want to be at home when I die. Mm. 595 00:32:39,320 --> 00:32:41,160 I don't mind going to your place... 596 00:32:43,720 --> 00:32:45,400 ..if you could book me a seat. 597 00:32:45,400 --> 00:32:47,040 THEY CHUCKLE 598 00:32:48,520 --> 00:32:50,280 They make you feel like home, you know. 599 00:32:52,160 --> 00:32:54,560 A nice place to be. I never thought it was like that. 600 00:32:56,320 --> 00:32:58,320 It looked like an hotel. HE CHUCKLES 601 00:32:58,320 --> 00:33:01,280 Would you say you're still managing to, you know, 602 00:33:01,280 --> 00:33:04,240 find enjoyment in things from day to day, enjoy yourself? 603 00:33:04,240 --> 00:33:07,560 Yeah. Yeah. Yeah, definitely. 604 00:33:08,560 --> 00:33:10,840 I like my telly. 605 00:33:10,840 --> 00:33:14,040 I did used to like reading, but I can't read now 606 00:33:14,040 --> 00:33:15,640 because I've got cataracts, 607 00:33:15,640 --> 00:33:17,680 but they wouldn't do them, because I was on chemo. 608 00:33:17,680 --> 00:33:20,560 Is it worth having them done now? 609 00:33:20,560 --> 00:33:23,240 I don't know how long I've got. 610 00:33:23,240 --> 00:33:26,840 So, I don't know. I'll sit and think about that one this afternoon. 611 00:33:29,080 --> 00:33:33,560 I don't know...if it's worth the bother. 612 00:33:36,000 --> 00:33:38,280 Home visits like these, to help with pain control 613 00:33:38,280 --> 00:33:41,680 and other important symptoms, can have a big impact. 614 00:33:43,000 --> 00:33:46,040 People who receive palliative care in the community are less likely 615 00:33:46,040 --> 00:33:48,480 to frequently attend emergency departments. 616 00:33:48,480 --> 00:33:51,840 It can reduce symptoms, reduce depression, 617 00:33:51,840 --> 00:33:54,320 increase satisfaction with care. 618 00:33:54,320 --> 00:33:57,680 They're more likely to be able to stay in their own homes and die at homes. 619 00:33:57,680 --> 00:34:01,960 So, there's really a great wealth of evidence to show the benefits 620 00:34:01,960 --> 00:34:04,320 in terms of quality of life for patients. 621 00:34:05,480 --> 00:34:08,920 Most people I meet are not afraid of being dead, 622 00:34:08,920 --> 00:34:12,120 they're afraid of the dying process. Mm. 623 00:34:12,120 --> 00:34:15,080 Dying is inevitable for all of us. 624 00:34:15,080 --> 00:34:19,800 I think if it's done badly, it's...it's really bad. 625 00:34:19,800 --> 00:34:23,160 And the kind of knock-on effect, the domino effect, 626 00:34:23,160 --> 00:34:28,200 for the people all around the person who dies, lasts for... 627 00:34:29,040 --> 00:34:31,680 You know, it can last forever, really. 628 00:34:31,680 --> 00:34:36,720 So, being able to give people a decent end 629 00:34:37,360 --> 00:34:40,120 feels like a really valuable thing to do. 630 00:34:43,320 --> 00:34:47,040 As I look more and more at what, for many people, 631 00:34:47,040 --> 00:34:49,120 is a death by a thousand cuts - 632 00:34:49,120 --> 00:34:51,760 interventions, drugs, 633 00:34:51,760 --> 00:34:54,600 blood tests, IVs, 634 00:34:54,600 --> 00:34:57,680 losing hair, 635 00:34:57,680 --> 00:35:01,160 organ failure as a result of treatments, 636 00:35:01,160 --> 00:35:03,960 what kind of dying is that? 637 00:35:03,960 --> 00:35:05,560 What kind of living is that? 638 00:35:05,560 --> 00:35:07,040 Mm. 639 00:35:07,040 --> 00:35:10,440 Now, you may say, "That's fine, that's the kind of living I want." 640 00:35:10,440 --> 00:35:12,160 OK. OK. 641 00:35:12,160 --> 00:35:14,720 It's very expensive in one kind of way, 642 00:35:14,720 --> 00:35:17,280 but it's also very expensive 643 00:35:17,280 --> 00:35:20,480 in terms of the life that you've perhaps denied yourself. 644 00:35:20,480 --> 00:35:24,720 Because in the last six weeks or three months of life, 645 00:35:24,720 --> 00:35:26,880 you spend half of that time in a hospital 646 00:35:26,880 --> 00:35:30,320 and the other half of it recovering from the hospital admissions. 647 00:35:30,320 --> 00:35:32,600 There is an argument to say... 648 00:35:34,040 --> 00:35:38,240 "Maybe I should just enjoy the time that's left 649 00:35:38,240 --> 00:35:41,720 "and do the things that make me human... 650 00:35:43,200 --> 00:35:45,400 .."rather than make my blood tests better". 651 00:35:48,680 --> 00:35:51,200 Palliative care isn't about death and dying, 652 00:35:51,200 --> 00:35:54,160 it's about helping people live the best life they can. 653 00:35:54,160 --> 00:35:56,200 And that's all the more important 654 00:35:56,200 --> 00:36:00,240 when chronic illness has to be faced early in life. 655 00:36:01,520 --> 00:36:04,080 Junior is 26 years old 656 00:36:04,080 --> 00:36:06,440 and suffering from a neurodegenerative condition 657 00:36:06,440 --> 00:36:11,000 that has left him having to breathe via tracheostomy. 658 00:36:11,000 --> 00:36:14,640 After two years spent in rehabilitation and care homes, 659 00:36:14,640 --> 00:36:17,400 he's just moved into his own place. 660 00:36:47,960 --> 00:36:49,360 Yeah. 661 00:36:56,720 --> 00:37:01,360 So if I said to you, "What's important to you right now?" 662 00:37:03,560 --> 00:37:07,640 So, you've set a goal of walking more. 663 00:37:10,920 --> 00:37:12,320 Yeah. 664 00:37:21,120 --> 00:37:22,560 Yeah. 665 00:37:22,560 --> 00:37:24,320 Absolutely. 666 00:37:25,560 --> 00:37:28,440 For Junior, it's all about being able to make his own decisions 667 00:37:28,440 --> 00:37:30,680 about the care he receives. 668 00:37:30,680 --> 00:37:35,760 It's about being in control and not letting disease dictate his life. 669 00:38:01,760 --> 00:38:05,080 Fundamentally, it's about choice, 670 00:38:05,080 --> 00:38:08,800 and realising that that choice doesn't mean giving up. 671 00:38:10,200 --> 00:38:14,880 People might think that moving to a palliative approach 672 00:38:14,880 --> 00:38:18,120 is giving up or is doing nothing, 673 00:38:18,120 --> 00:38:20,840 but, in fact, that's not true. 674 00:38:20,840 --> 00:38:23,240 We need to start realising that, actually, 675 00:38:23,240 --> 00:38:25,440 palliative care isn't doing nothing, 676 00:38:25,440 --> 00:38:28,520 it is doing something really important for people 677 00:38:28,520 --> 00:38:31,920 where there are no curative options left. 678 00:38:31,920 --> 00:38:36,880 If you change the focus of clinical care away from the numbers 679 00:38:37,840 --> 00:38:40,680 and away from the change in the scan, 680 00:38:40,680 --> 00:38:43,480 towards what's actually going to make tomorrow better 681 00:38:43,480 --> 00:38:45,600 or worth hanging around for, 682 00:38:45,600 --> 00:38:48,040 then suddenly you've turned the kaleidoscope. 683 00:38:48,040 --> 00:38:50,640 You've changed a pattern of broken glass that's horrible 684 00:38:50,640 --> 00:38:53,680 into something quite beautiful, potentially. 685 00:38:53,680 --> 00:38:57,000 That says, I guess, palliative care becomes much more 686 00:38:57,000 --> 00:38:59,360 about the business of living than it does about dying. 687 00:38:59,360 --> 00:39:00,800 Yeah. Absolutely. Absolutely. 688 00:39:02,040 --> 00:39:05,960 And that's what St Christopher's is all about. 689 00:39:05,960 --> 00:39:09,160 Above everything else, it's a celebration of life 690 00:39:09,160 --> 00:39:12,800 and of living that life to its fullest. 691 00:39:12,800 --> 00:39:15,200 I try to be strong in myself, 692 00:39:15,200 --> 00:39:18,000 but it's the family who are very stressed. 693 00:39:18,000 --> 00:39:22,480 And so that makes me more stressful. 694 00:39:22,480 --> 00:39:23,960 So, coming here is like an escape. 695 00:39:25,960 --> 00:39:28,480 There's an arts-and-crafts room. 696 00:39:29,440 --> 00:39:31,480 # Leaves, glorious leaves. # 697 00:39:31,480 --> 00:39:33,080 THEY CHUCKLE 698 00:39:34,320 --> 00:39:36,720 Can I do that one? Yeah. 699 00:39:36,720 --> 00:39:38,800 So, you can make your own pattern. 700 00:39:38,800 --> 00:39:41,040 And we could make our own cards. 701 00:39:41,040 --> 00:39:43,520 You'd be quite good at it, wouldn't you? 702 00:39:43,520 --> 00:39:46,120 OK, I could make a couple of Christmas cards, couldn't I? 703 00:39:46,120 --> 00:39:48,240 I'll be dead by the time I learn that! 704 00:39:48,240 --> 00:39:49,960 THEY LAUGH 705 00:39:52,000 --> 00:39:56,240 They even offer complementary therapies, like acupuncture. 706 00:39:56,240 --> 00:39:59,520 My balance, it helps the balance. 707 00:39:59,520 --> 00:40:03,960 I've been losing balance recently. 708 00:40:03,960 --> 00:40:06,800 OK. So, that helps a lot. 709 00:40:06,800 --> 00:40:11,880 And all of this gives people time and space to relax and reflect. 710 00:40:14,160 --> 00:40:16,320 You could do that, couldn't you? No. 711 00:40:16,320 --> 00:40:18,480 Or something like that. 712 00:40:18,480 --> 00:40:20,440 No, I like this. You're happy with the clay? 713 00:40:20,440 --> 00:40:22,440 Yeah. 714 00:40:22,440 --> 00:40:25,320 I've learned to accept it. 715 00:40:25,320 --> 00:40:29,000 There's no miracles, so I just have to take each day 716 00:40:29,000 --> 00:40:32,040 and just be thankful for each day I'm alive. 717 00:40:32,040 --> 00:40:35,800 I've learned to accept it, but my sisters and that haven't. 718 00:40:36,960 --> 00:40:38,720 Nice deep breath. 719 00:40:40,520 --> 00:40:42,360 It's stopped. 720 00:40:42,360 --> 00:40:44,520 It's, er...more relaxed now. 721 00:40:44,520 --> 00:40:45,840 Yeah. 722 00:40:45,840 --> 00:40:50,880 I've insisted on getting some make-up on before I get cremated. 723 00:40:50,920 --> 00:40:52,960 Good for you. 724 00:40:52,960 --> 00:40:56,480 SHE CHUCKLES I want to go off looking my best. 725 00:40:56,480 --> 00:40:59,640 THEY LAUGH It's ridiculous, isn't it?! 726 00:41:01,440 --> 00:41:05,080 And being at your best is what it's all about. 727 00:41:05,080 --> 00:41:08,960 And unlike in hospital, there's a sense of community 728 00:41:08,960 --> 00:41:12,520 and people with whom you can share everything. 729 00:41:12,520 --> 00:41:16,280 # Ah, oh, smokestack lightning...# 730 00:41:17,960 --> 00:41:21,160 It's going to be played at my funeral. 731 00:41:21,160 --> 00:41:24,200 I'm getting a lot of... It's got to be, "Oh!" 732 00:41:24,200 --> 00:41:25,840 THEY CHUCKLE 733 00:41:25,840 --> 00:41:28,240 It's one piece of music, is it, Barbara? 734 00:41:28,240 --> 00:41:33,160 No, it's a bit of...a bit of drama going in, in the coffin... 735 00:41:34,680 --> 00:41:36,400 ..and then, stop! And then... 736 00:41:37,840 --> 00:41:40,240 Howlin' Wolf. Howlin' Wolf? 737 00:41:40,240 --> 00:41:43,560 As I go out. Brilliant. Fabulous. 738 00:41:45,160 --> 00:41:47,560 It's got to be loud, hasn't it? Try it on this piece of paper. 739 00:41:47,560 --> 00:41:49,480 As you're going out. 740 00:41:49,480 --> 00:41:50,840 SHE LAUGHS 741 00:41:50,840 --> 00:41:52,480 No, I'll take... We'll take it off. 742 00:41:52,480 --> 00:41:55,080 No, I don't even want to talk about it. 743 00:41:57,280 --> 00:41:58,960 Right. 744 00:41:58,960 --> 00:42:01,160 Being here, in this hospice, 745 00:42:01,160 --> 00:42:03,520 it's become abundantly clear 746 00:42:03,520 --> 00:42:07,480 that it's actually, really, truly, 747 00:42:07,480 --> 00:42:11,480 about life and living life as fully as it can be lived 748 00:42:11,480 --> 00:42:13,240 up until the very last second of it. 749 00:42:13,240 --> 00:42:15,360 Every second of that life being important. 750 00:42:15,360 --> 00:42:18,280 Yeah. I don't want them sitting there, going, "Waa!" 751 00:42:19,840 --> 00:42:21,920 This is not the place we expect it to be. 752 00:42:21,920 --> 00:42:26,960 There's laughter, there's happiness, there's celebration, um... 753 00:42:27,360 --> 00:42:30,840 And it is a place in which the team here 754 00:42:30,840 --> 00:42:33,920 do some of the greatest good that can be done for a patient 755 00:42:33,920 --> 00:42:36,480 at any time in their lives. 756 00:42:36,480 --> 00:42:40,600 It's very clear to me that palliative care improves your quality of life, 757 00:42:40,600 --> 00:42:45,280 but what's the evidence of its impact on quantity of life? 758 00:42:45,280 --> 00:42:48,880 Is there always a trade-off between living longer and living better? 759 00:42:48,880 --> 00:42:50,520 Bye! 760 00:42:52,000 --> 00:42:57,040 Katherine Sleeman has been researching how to improve end-of-life care. 761 00:42:57,480 --> 00:43:01,680 People can worry, um...that there has to be a trade-off 762 00:43:01,680 --> 00:43:04,960 between quality of life and quantity of life. 763 00:43:04,960 --> 00:43:07,400 People understand that palliative care might help 764 00:43:07,400 --> 00:43:09,320 improve their quality of life, 765 00:43:09,320 --> 00:43:12,000 it might improve their physical symptoms. 766 00:43:13,680 --> 00:43:18,600 But they worry that they will be giving up on, um... 767 00:43:19,160 --> 00:43:21,800 fancy medical treatments and therefore, 768 00:43:21,800 --> 00:43:25,720 they will reduce their overall quantity of life left. 769 00:43:25,720 --> 00:43:28,720 That palliative care will essentially hasten their deaths. 770 00:43:28,720 --> 00:43:32,120 And there's quite a lot of evidence coming out now 771 00:43:32,120 --> 00:43:34,760 from randomised controlled trials that that's not the case. 772 00:43:34,760 --> 00:43:38,480 Yes, palliative care does improve people's quality of life, 773 00:43:38,480 --> 00:43:41,400 but in some circumstances, palliative care even improves 774 00:43:41,400 --> 00:43:45,160 people's quantity of life, so there's no trade-off. 775 00:43:45,160 --> 00:43:47,600 And that's something of a revelation for me. 776 00:43:47,600 --> 00:43:50,480 Palliative care isn't necessarily an either/or choice. 777 00:43:50,480 --> 00:43:52,200 I thought it would be. 778 00:43:52,200 --> 00:43:55,960 And it's something Rob George sees in his hospice, too. 779 00:43:55,960 --> 00:43:58,560 The evidence from early palliative-care interventions 780 00:43:58,560 --> 00:44:03,480 in things like lung cancer, er...actually improves prognosis. 781 00:44:03,840 --> 00:44:05,440 I'll say that again. 782 00:44:05,440 --> 00:44:09,160 Early palliative care for people with certain kinds of cancer 783 00:44:09,160 --> 00:44:12,000 actually improves prognosis. 784 00:44:12,000 --> 00:44:14,400 That is gobsmacking, really, isn't it? Yeah. 785 00:44:14,400 --> 00:44:16,880 That actually, what outperforms all of that in the end 786 00:44:16,880 --> 00:44:21,160 is holistic, decent care in the right setting, with the right focus. 787 00:44:21,160 --> 00:44:23,760 That's absolutely correct. 788 00:44:28,880 --> 00:44:31,680 And this means that the focus of palliative care 789 00:44:31,680 --> 00:44:33,960 isn't always on the end of life. 790 00:44:33,960 --> 00:44:36,960 For some, that means high-quality care 791 00:44:36,960 --> 00:44:39,880 over a long period of their lives. 792 00:44:41,560 --> 00:44:43,520 Back in Cardiff at the Velindre Hospital, 793 00:44:43,520 --> 00:44:46,680 Mark Talbot has invited me to sit in on a consultation 794 00:44:46,680 --> 00:44:49,560 with a patient he's been seeing for years. 795 00:44:51,920 --> 00:44:54,800 Alison has advanced bowel cancer. 796 00:44:56,120 --> 00:44:58,720 How important has this part of your... 797 00:44:58,720 --> 00:45:02,160 I guess your care, your treatment, been - the palliative care team? 798 00:45:02,160 --> 00:45:06,000 Oh, it's been very important, um...because it's given me 799 00:45:06,000 --> 00:45:09,720 that opportunity to really talk about the difficult stuff. 800 00:45:09,720 --> 00:45:13,160 We've had some fairly frank conversations about death and dying, haven't we? 801 00:45:13,160 --> 00:45:14,960 Mm. Mm. Um... 802 00:45:14,960 --> 00:45:17,000 And we've talked about your wishes 803 00:45:17,000 --> 00:45:19,240 and what treatments you would consider. 804 00:45:19,240 --> 00:45:21,960 Yeah. And what treatments you wouldn't consider. 805 00:45:21,960 --> 00:45:24,080 I'm at the point now where I've decided 806 00:45:24,080 --> 00:45:26,120 I'm not having any more treatment. 807 00:45:26,120 --> 00:45:29,400 Mm. My second lot of chemotherapy was horrendous. 808 00:45:29,400 --> 00:45:30,960 Mm-hm. Um... 809 00:45:30,960 --> 00:45:33,480 And, again, I was really poorly. 810 00:45:33,480 --> 00:45:37,400 Um...it was after that, I thought, "This isn't worth it any more". 811 00:45:37,400 --> 00:45:41,000 Yeah. This, you know, six months of being completely poorly... 812 00:45:41,000 --> 00:45:46,040 Yes. ..wasn't worth, um...you know, the amount of time left I had. 813 00:45:46,240 --> 00:45:49,480 Mm-hm. I'd rather be well... 814 00:45:49,480 --> 00:45:51,640 Mm. ..and perhaps have a shorter period of time... 815 00:45:51,640 --> 00:45:54,400 Mm-hm. ..than be seriously ill all the time... 816 00:45:54,400 --> 00:45:57,400 Mm. ..and maybe have, you know, a couple of months extra. 817 00:45:57,400 --> 00:45:59,680 And there's a big event to plan for, isn't there? 818 00:45:59,680 --> 00:46:01,400 SHE LAUGHS Yes, my party. 819 00:46:01,400 --> 00:46:04,560 Yeah. My 30th wedding anniversary. 820 00:46:04,560 --> 00:46:06,760 I had a wobble just before Christmas, saying, 821 00:46:06,760 --> 00:46:08,600 "I don't know how I'm going to get..." 822 00:46:08,600 --> 00:46:10,960 Oh, I'm just going to cry again. 823 00:46:10,960 --> 00:46:12,840 "..how I'm going to get there." Yes. 824 00:46:12,840 --> 00:46:15,520 Um...it was kind of like, 825 00:46:15,520 --> 00:46:17,920 "What I do to make sure I get there?" Yes. 826 00:46:17,920 --> 00:46:20,800 But I'm confident now that I will get there. Yeah. 827 00:46:20,800 --> 00:46:24,280 And we'll have, you know, we'll have the celebration and, er... 828 00:46:24,280 --> 00:46:26,680 I'll have done everything that was important to me 829 00:46:26,680 --> 00:46:29,000 over the last four years, so that's brilliant. 830 00:46:30,520 --> 00:46:34,000 A lot of emotional and physical energy goes into having treatments 831 00:46:34,000 --> 00:46:36,200 as anything else. 832 00:46:36,200 --> 00:46:38,960 And the investment, physically, 833 00:46:38,960 --> 00:46:43,160 in going through some kind of treatment does have a cost. 834 00:46:43,160 --> 00:46:46,600 And that may be one of the reasons why the early involvement 835 00:46:46,600 --> 00:46:51,320 of palliative care appearing to give us a survival benefit 836 00:46:51,320 --> 00:46:54,280 is that people can invest that energy 837 00:46:54,280 --> 00:46:56,480 in the things that matter to them. 838 00:46:56,480 --> 00:47:00,200 So, they're not wasting the energy coping with the treatments, 839 00:47:00,200 --> 00:47:04,280 they're actually using the energy to complete their lives. 840 00:47:04,280 --> 00:47:06,920 Often, I think in the past, palliative care was analogised 841 00:47:06,920 --> 00:47:10,320 with the last days and weeks of life. 842 00:47:10,320 --> 00:47:15,040 And certainly, I think, over the last 10, 15, even 20 years, 843 00:47:15,040 --> 00:47:18,080 that has very much broadened. 844 00:47:18,080 --> 00:47:21,320 So, there are patients that I have been seeing for ten years. 845 00:47:21,320 --> 00:47:23,880 Yes, their risk of a sudden event happening 846 00:47:23,880 --> 00:47:28,840 and their risk of a sudden death is significant, 847 00:47:28,840 --> 00:47:32,400 but it doesn't mean it's going to happen at any point around the corner. 848 00:47:32,400 --> 00:47:35,520 So, it's really a different approach to try and focus 849 00:47:35,520 --> 00:47:37,240 what is important to the individual. 850 00:47:37,240 --> 00:47:41,920 So, improving people's symptoms so people can get about, 851 00:47:41,920 --> 00:47:46,440 do their thing and get to their special moment. 852 00:47:46,440 --> 00:47:50,800 We've had individuals who've wanted to go to music concerts. 853 00:47:50,800 --> 00:47:53,120 They perhaps want to go to a football game or rugby game. 854 00:47:53,120 --> 00:47:55,680 And actually, improving their symptoms and breathlessness 855 00:47:55,680 --> 00:48:00,040 so that they can achieve that is making a bad situation, 856 00:48:00,040 --> 00:48:02,640 a challenging situation, less bad. 857 00:48:03,840 --> 00:48:06,640 What I've seen over the last few months has shown me 858 00:48:06,640 --> 00:48:11,360 that we can approach death in a better and more positive way. 859 00:48:11,360 --> 00:48:13,520 But, even in a perfect world, 860 00:48:13,520 --> 00:48:18,400 the decisions we take at the end of life are never easy. 861 00:48:18,400 --> 00:48:21,680 Professor John Chester is a cancer specialist. 862 00:48:21,680 --> 00:48:26,600 And when it comes to the sorts of decisions that one makes 863 00:48:28,160 --> 00:48:30,960 about when to treat, how to treat, what to treat... 864 00:48:30,960 --> 00:48:33,920 Yep. ..what is that like? 865 00:48:33,920 --> 00:48:36,360 On the face of it, sometimes, I guess it must seem like 866 00:48:36,360 --> 00:48:39,080 it should be pretty black and white, but... 867 00:48:39,080 --> 00:48:40,520 It may seem like that. 868 00:48:40,520 --> 00:48:43,080 Needless to say, there's more to it than that. 869 00:48:43,080 --> 00:48:46,440 You've got to take into account the possible benefits which, in some cases, are huge, 870 00:48:46,440 --> 00:48:48,640 but also the potential costs, 871 00:48:48,640 --> 00:48:52,040 which, in terms of side-effects and so on, can be significant. 872 00:48:52,040 --> 00:48:56,200 And the great difficulty and, if you like, the art of my job, 873 00:48:56,200 --> 00:48:57,960 rather than the pure science of my job, 874 00:48:57,960 --> 00:49:01,280 is around balancing those good things and bad things. 875 00:49:01,280 --> 00:49:03,480 Not everybody we treat will be cured. 876 00:49:03,480 --> 00:49:05,840 Not everybody we give the treatment to 877 00:49:05,840 --> 00:49:08,480 will have the side-effects and the toxicities of them. 878 00:49:08,480 --> 00:49:12,200 The thing that I think most people know about cancer therapies 879 00:49:12,200 --> 00:49:16,080 is that they are hard, that they make you feel awful, 880 00:49:16,080 --> 00:49:21,040 um...and the benefits sometimes questionable. 881 00:49:21,200 --> 00:49:25,640 If you're talking to me as a patient, what...what do you say to me 882 00:49:25,640 --> 00:49:29,920 to make me feel that any of that is worth going through? 883 00:49:29,920 --> 00:49:32,360 When I discuss treatment with patients, 884 00:49:32,360 --> 00:49:36,840 I quite often give them a simplified version of the statistics that are available, 885 00:49:36,840 --> 00:49:40,240 but I have to say that statistics apply to groups of people, 886 00:49:40,240 --> 00:49:41,560 not to individual people. 887 00:49:41,560 --> 00:49:45,240 So, I can give them a probability that the treatment will help them, 888 00:49:45,240 --> 00:49:47,880 but I can't tell them if it will help them, as an individual. 889 00:49:47,880 --> 00:49:52,040 And some people will take a certain hope of success 890 00:49:52,040 --> 00:49:53,920 that other people wouldn't. 891 00:49:53,920 --> 00:49:56,120 So, people's treatment decisions are based on their, 892 00:49:56,120 --> 00:49:58,840 if you like, their own interpretation of hope. 893 00:50:01,160 --> 00:50:03,800 These are decisions that Julie Hepburn has faced. 894 00:50:06,640 --> 00:50:09,720 What was that like, that first meeting, 895 00:50:09,720 --> 00:50:13,760 where they were telling you what the results of your tests were? 896 00:50:13,760 --> 00:50:15,360 There wasn't a lot of discussion. 897 00:50:15,360 --> 00:50:17,840 It was all sort of quite well-laid down, I think, 898 00:50:17,840 --> 00:50:21,520 what the treatment was for my stage of cancer. 899 00:50:21,520 --> 00:50:23,920 It was quite clear, I think at that point, I would need surgery 900 00:50:23,920 --> 00:50:26,000 and chemotherapy afterwards. 901 00:50:26,000 --> 00:50:29,760 So, it was more information-giving at that stage. 902 00:50:29,760 --> 00:50:33,280 And what was the worst of the side-effects for you? 903 00:50:33,280 --> 00:50:35,520 The nausea was the worst thing. 904 00:50:35,520 --> 00:50:37,400 Um...I remember days and days 905 00:50:37,400 --> 00:50:40,600 of sitting in front of plates of food and thinking, 906 00:50:40,600 --> 00:50:43,640 "I just can't force myself to eat that". 907 00:50:43,640 --> 00:50:46,280 Or getting up at 6:00 in the morning, because that was the only time 908 00:50:46,280 --> 00:50:49,360 that I really felt like eating some cereal for breakfast. 909 00:50:49,360 --> 00:50:53,600 And it was, um...you know, it was a bit grim, really. 910 00:50:53,600 --> 00:50:56,880 It's not really living, it's existing. 911 00:50:56,880 --> 00:51:00,160 But it turns out that Julie would have been willing to take a chance on a cure, 912 00:51:00,160 --> 00:51:04,320 even if, to some, that chance might have seemed quite small. 913 00:51:04,320 --> 00:51:07,520 I had quite a good chance of a cure - 50%. 914 00:51:07,520 --> 00:51:10,440 Um...you know, even if I'd had stage four 915 00:51:10,440 --> 00:51:12,280 and it had been a 10% chance, 916 00:51:12,280 --> 00:51:14,920 that would be enough to keep going, as well. 917 00:51:14,920 --> 00:51:19,360 So 10%, a 10% chance of survival, 918 00:51:19,360 --> 00:51:21,600 you would still have gone ahead with the chemotherapy? 919 00:51:21,600 --> 00:51:23,640 Yes, I would. 920 00:51:23,640 --> 00:51:25,480 And, John, I mean, this is something... 921 00:51:25,480 --> 00:51:27,520 You know, it's interesting, isn't it? 922 00:51:27,520 --> 00:51:31,560 10% might not sound like a lot to us, I guess, as clinicians, 923 00:51:31,560 --> 00:51:34,120 but for patients like Julie, 924 00:51:34,120 --> 00:51:36,640 that's...that's more than enough sometimes. 925 00:51:36,640 --> 00:51:37,880 Absolutely. 926 00:51:37,880 --> 00:51:40,680 Both personal experience and published evidence suggests 927 00:51:40,680 --> 00:51:43,320 that patients will often take different odds 928 00:51:43,320 --> 00:51:46,400 from what a professional would do. 929 00:51:46,400 --> 00:51:51,320 10% might not be enough for a doctor to make the same decision. 930 00:51:51,320 --> 00:51:54,360 But for you, still, all of that has still been worth it? 931 00:51:54,360 --> 00:51:58,200 Oh, yes. Yes. Because as far as I'm concerned, 932 00:51:58,200 --> 00:52:01,200 I am cured of the bowel cancer. Mm-hm. 933 00:52:03,040 --> 00:52:05,480 For many like Julie, a treatment with severe side-effects 934 00:52:05,480 --> 00:52:10,160 is worth it, as long as there might be some chance of success. 935 00:52:10,160 --> 00:52:14,320 And it shows us that there's no clearly defined line telling us 936 00:52:14,320 --> 00:52:19,120 when palliative care should start and other treatments should stop. 937 00:52:19,120 --> 00:52:21,680 What we now realise is that palliative care works best 938 00:52:21,680 --> 00:52:25,200 when it's provided early in the course of someone's disease. 939 00:52:25,200 --> 00:52:29,280 So, 30, 40 years ago, actually, it's true that palliative care 940 00:52:29,280 --> 00:52:33,360 was sort of the bit that happened after all the medicine had finished. 941 00:52:33,360 --> 00:52:37,000 It was tacked on at the end, really, when all hope was gone. 942 00:52:37,000 --> 00:52:42,040 But now, um...our recent evidence from randomised controlled trials 943 00:52:42,280 --> 00:52:45,000 shows that palliative care works best when it's provided early 944 00:52:45,000 --> 00:52:46,440 and collaboratively. 945 00:52:46,440 --> 00:52:49,000 So it's not either/or, it's an extra layer of support. 946 00:52:51,880 --> 00:52:54,520 The thing I've learned, I think, above all, in making this film, 947 00:52:54,520 --> 00:52:57,520 is that every second really does count. 948 00:52:57,520 --> 00:53:02,560 And in that is the opportunity to achieve a better death. 949 00:53:02,560 --> 00:53:05,920 To embrace the opportunity to live your life 950 00:53:05,920 --> 00:53:09,080 right up until the very last moment. 951 00:53:12,920 --> 00:53:14,560 In the Netherlands, 952 00:53:14,560 --> 00:53:18,160 there's a charity that tries to help people do just that. 953 00:53:22,480 --> 00:53:24,880 The Ambulance Wish Foundation aims to grant people 954 00:53:24,880 --> 00:53:27,520 one last wish before they die. 955 00:53:33,400 --> 00:53:35,240 We do 2,000 wishes a year. 956 00:53:35,240 --> 00:53:38,520 That's almost five or six a day. 957 00:53:38,520 --> 00:53:42,760 270 volunteers help terminally-ill patients 958 00:53:42,760 --> 00:53:45,640 to fulfil their last wishes. 959 00:53:45,640 --> 00:53:50,320 Ina Harding has cancer, which has recently progressed. 960 00:53:50,320 --> 00:53:52,760 And with the help of the charity, 961 00:53:52,760 --> 00:53:55,560 she's making the most of the time she has left. 962 00:53:57,800 --> 00:54:00,880 The event for my mother is... 963 00:54:30,560 --> 00:54:32,840 These efforts have inspired charities in the UK 964 00:54:32,840 --> 00:54:34,960 to set up similar services. 965 00:54:36,040 --> 00:54:37,720 People are going to die. 966 00:54:37,720 --> 00:54:42,120 You don't know how long they live any more, but not so long. 967 00:54:42,120 --> 00:54:47,000 And even then, they can smile and they can laugh and they have fun. 968 00:54:47,000 --> 00:54:50,240 It is very important for the patients, 969 00:54:50,240 --> 00:54:53,760 because they can die peacefully. 970 00:54:53,760 --> 00:54:56,200 They let it go, everything's OK. 971 00:54:56,200 --> 00:55:00,160 This is the most important thing why we do this. 972 00:55:24,360 --> 00:55:27,200 Over the last few months, the people I've met, 973 00:55:27,200 --> 00:55:30,360 the doctors, nurses, carers and patients, 974 00:55:30,360 --> 00:55:33,320 have changed the way I will think about every single patient 975 00:55:33,320 --> 00:55:35,080 I will ever see. 976 00:55:42,200 --> 00:55:47,240 I've seen first-hand the importance of being able to talk about death. 977 00:55:52,160 --> 00:55:53,800 It allows us to prepare. 978 00:55:53,800 --> 00:55:55,440 It helps us to grieve. 979 00:55:55,440 --> 00:55:58,880 It may lead us to an acceptance of what is, after all, 980 00:55:58,880 --> 00:56:01,520 inevitable for all of us. 981 00:56:04,160 --> 00:56:08,000 Finding an acceptance of death can empower us with choice. 982 00:56:08,000 --> 00:56:09,880 Allow us to stay in control 983 00:56:09,880 --> 00:56:14,280 and reclaim the narrative of our lives right to the end. 984 00:56:14,280 --> 00:56:16,120 To die a better death. 985 00:56:19,880 --> 00:56:21,840 In the end, it's about choices, 986 00:56:21,840 --> 00:56:24,040 and there's no right or wrong answer. 987 00:56:24,040 --> 00:56:26,320 It's about what's important to you 988 00:56:26,320 --> 00:56:29,080 right up until the last moment of your life. 989 00:56:29,080 --> 00:56:31,120 No matter how long or short your life is, 990 00:56:31,120 --> 00:56:33,040 there will be decisions to make. 991 00:56:33,040 --> 00:56:35,640 Decisions that will affect every moment of your life. 992 00:56:35,640 --> 00:56:37,400 And I can't help but think 993 00:56:37,400 --> 00:56:40,720 that we'll all make better, informed decisions 994 00:56:40,720 --> 00:56:43,520 if we start having those conversations earlier. 995 00:56:45,200 --> 00:56:48,840 Ina ends her day with a visit to her grandchildren. 996 00:57:19,960 --> 00:57:22,520 It's been almost a year since Alison decided 997 00:57:22,520 --> 00:57:24,480 to stop having her chemotherapy. 998 00:57:25,840 --> 00:57:30,520 Alison went ahead and renewed her wedding vows. 999 00:57:30,520 --> 00:57:32,760 I'm pleased to say that I was one of the guests, 1000 00:57:32,760 --> 00:57:37,440 and we spent the evening together, with her friends and family, 1001 00:57:37,440 --> 00:57:40,480 in a beautiful setting, in a little harbour. 1002 00:57:40,480 --> 00:57:45,520 And I just felt it encapsulated what good palliative care is about. 1003 00:57:45,640 --> 00:57:48,200 So, what I think we need to sometimes do in health care 1004 00:57:48,200 --> 00:57:52,440 is not see that the patient is someone who, you know, 1005 00:57:52,440 --> 00:57:55,880 comes on to our health care teams and then needs help 1006 00:57:55,880 --> 00:57:57,920 and then is discharged again, 1007 00:57:57,920 --> 00:58:02,000 but maybe we can reframe it as saying that we become part of their team, 1008 00:58:02,000 --> 00:58:04,240 to help them with the special moments in their life, 1009 00:58:04,240 --> 00:58:07,280 to help them with the moments that are meaningful. 1010 00:58:07,280 --> 00:58:09,480 # We can be heroes 1011 00:58:11,320 --> 00:58:13,240 # Just for one day 1012 00:58:16,560 --> 00:58:21,280 # And you, you can be mean 1013 00:58:24,520 --> 00:58:28,960 # And I, I'll drink all the time...#