Compexities of Emotions in Palliative Care

I do not envy the people that make decisions that impact millions of people and have far reaching implications, including the death of people nationally and internationally. The complexity of decision making in palliative care, involving one loved one, is complex enough for me.
In spite of doing palliative care for years in my medical practice, I still find that each situation is unique, and even with careful consideration, the best intentions, significant medical knowledge, and rational thinking, surprises often occur. The problem is that each person is unique, each relationship is unique, and in many of these situations, human emotions (which often don’t lend themselves to logic) may be the main determinant of “suffering”.
On a previous entry I spoke of the development of the systems of palliative care in Calgary and its delivery (fidelity), and although we have made tremendous strides, we are far from the ideal. In this entry, I would like to discuss in some detail the emotional aspects and interactions that affect the quality of care, and may pertain to the patient’s “suffering”. My intention is not to delve into the technical and specifics of symptom management to any great degree, but rather how our personalities and our relationship with the loved one can influence the care the patient receives. Some of you may have additions to this discussion, and they are welcome; but, for the most part, most of you will not have thought of these things, or for that matter, been confronted by the situation. My advice would be to read this entry over carefully, and think on it. When faced with the situation of the impending death of a loved one, we will only get one “go” at our approach to the situation, but we will live with it the rest of our lives. So although the following may be long and somewhat depressing, it certainly has the potential to be enlightening and informative in the future, when you can say “Although I mourn the loss of my loved one, I take solace in the fact that I did what I could, and he/she would be pleased”.
In this post I also do not intend to address, in any detail, the traditional emotional reactions of a patient given the news that they are facing an “end of life” situation. The reactions of denial, anger, negotiations and finally acceptance, are generally known and certainly have been addressed in the medical literature. I would caution, however, the people who feel that these emotions are typical and easily recognized. One of my patients (an ex-military man) in an end of life facility kept talking about “when he gets home”. His family and the nursing staff concluded that I had not informed him of his dire prognosis, and insisted that I explain to the patient the seriousness of his condition (which I already had----in detail). I had the nursing staff accompany me to the patient’s bedside, and asked him if he recalled our discussion regarding his outlook over the next few weeks, and the fact that he would not leave the facility alive. His answer was “Of course, why would you raise that issue again”? Obviously he had chosen this way of dealing with his death. Besides, he felt that he was protecting his family, and he didn’t know how to deal with tears. I had spoken to him previously about sharing emotions and his response was that he didn’t do that throughout his lifetime and he didn’t see any reason to do it now. Did this man need an attitude adjustment or did he need support in his decision. I chose to inform the family as to his feelings and encouraged them to express their feelings to him in a positive way, and to understand that although he loved them, he felt his function, as long as he was alive, was to protect them, including the emotional pain of his impending death. The basic principle, as I see it, is the patient’s needs should come before our own. We have time to deal with ours.
One of the things that I heard frequently as an end of life physician was that the friends of the person dying “disappeared” as the disease progressed. At first I was upset by this fact, but over the years began to understand that this was a multifaceted problem. The simplest answer given was that people “didn’t know what to say”, and so they avoided the visit altogether. Although this probably is the reality, it still constitutes a cop-out As a friend, whatever you say at the time is probably quite alright with your dying friend; your presence speaks louder than words. Frequently, friends are concerned about giving their loved friend a cold or other contagious illness they may be harboring. My advice is to simply wait a few days, or wear a mask and wash your hands during the visit, or ask the nursing staff and the patient for input. Although it is true that people who are dying may be more susceptible to infections, you won’t be contagious forever and your visit may be important to your friend.
Be attentive during your visit. Address the patients concerns and discomforts and forget about your own discomfort. Know when to leave. As a rule, short frequent visits are preferable to long visits, unless you are in the role of an involved care giver. If your usual relationship involved human contact such as hugging, it should continue, with due consideration of the patient’s frailty. In short, it is best to continue your relationship in a normal, supportive manner and focus on the needs of your loved friend, not your insecurities. If some situations bother you, call a nurse or leave the room. I have seen amazing care given by lay people----the kind of care that probably is incredibly important to the dying loved one. I have seen friends put on the make-up of their dying friend, provide the basin and hold hair away from the basin while the sick person vomits, provide foot rubs and neck rubs, assist walks, or take their friend for a stroll in a wheel chair. Human contact can be extremely important during this period of time, so just the simple act of holding their hand can be helpful and reduce the amount of medication needed. One of the most touching scenes I remember was while making a house call on a thirty seven year old woman dying of cervical cancer. As I entered the room, her younger brother was sitting on the couch, cradling her head on his lap and gently stroking her hair.
The above is relatively easy. More difficult situations arise with the immediate next of kin, the immediate care givers, respective husbands/wives, attending physicians, etc. The husband may feel that the dying person does not wish to be seen in their emaciated state; and although, when we are healthy, this seems rational, I have rarely seen a patient that did not appreciate short visits. For the most part, our vanity under these circumstances seems to disappear, and we appreciate our friends.
We should keep in mind that for some people visiting can be stressful. This is particularly true of the person that was always the social “entertainer” and attempts to continue to entertain, and the person who never was by nature a people person. I recall one woman who complained that her husband was rude to his visitors by leaving the room and going to bed after an hour’s visit. Obviously both she and the visitors were not sensitive enough to his needs to know when “leaving” on their part should have occurred.
On the other hand, I have seen situations where the husband/wife has felt the visitor’s presence, for whatever reason, exacerbated physical symptoms. If this was clearly evident, with the patient’s approval, visitations should be restricted. I should point out that this is rarely the case. The usual scenario is that the visit is too long, the disease process is worsening (against the hopes of the “significant” other), or the patient and his/her spouse is embarrassed by the disease symptomatology in the presents of friends. If it is perceived that this latter is the case, continual reassurance is needed that your presence is for the purpose of aiding and providing comfort. I have found that this hurdle is actually harder to overcome in dealing with the spouse than the dying patient.
On many occasions, I have found that the wife has felt that it is her responsibility to look after her dying husband 24/7. It is as though this is her last tribute to her loved one. As caregivers, loved ones, and friends we must recognize this as a strong need on the spouses’ part. At the same time every effort must be made to give her/him time to rest. An exhausted spouse is not going to help her/his mate, and after a while everything becomes a blur to them. If possible, spending the night (a minimum of 8 to 10 hours of rest time and the unloading of responsibility is mandatory) and just sitting at the bedside, is reassuring to both the patient and the spouse. Availability of help with bathroom needs is a small thing that is extremely important when we are in an extremely weakened state. Maintaining bowel and bladder control goes a long way in maintaining one’s dignity. Some option time during the day is also useful for the caregiver. This must be done with the understanding of the spouse’s strong need to be continuously present. Reassurance of notification of any change in condition goes a long way in relieving the spouse of their guilt and the feeling that they are abandoning their loved one. Generally this downloading of the responsibility for care is easier for the spouse if the person assuming care is a family member, but friends, professionals, and even volunteers can often be used.
We all have hopes that our dying loved one is going to be the exception to the rule and make a miraculous recovery. Hope certainly is beneficial and should never be totally abandoned. We must, however, always be cognizant that our hopes for our dying loved one may create problems with the care of the patient and be in conflict with their priorities. One of my patients, who had been on intervention treatment for years and was failing again for the fourth time, was in tears as she told me that she wanted to stop her chemo and aggressive treatment, and only wished to be kept comfortable. She didn’t know how to tell her husband, and felt that she was letting her doctors down who had been so positive and helpful. Isn’t it strange how remarkable and considerate people can be when they are the ones who are in desperate need? Unfortunately, in this case, in was the patient that was showing the most sensitivity. I have seen situations where a patient with a complete bowel obstruction is encouraged to take some “nourishment” by mouth in the hopes they will improve. Unfortunately, this simply increases gastric secretions and causes more nausea and vomiting. Occasionally the patient and their loved ones will grasp at straws, with the attitude that desperate situations require desperate approaches. One of my patients sold their house and went to another country to find solutions against my advice. Unfortunately, he was told by this alternate cancer care provider that he could take ONLY medication prescribed by their facility. Needless to say, in a short time, he returned to Canada in severe pain and in a near death situation.
Occasionally, patients are referred for counseling as an adjunct to end of life care. For the most part, this is a positive experience; however, councilors must be careful not to overemphasize the importance of having a positive attitude. Some patients (including my sister), feel that they are a failure if their disease progresses in spite of positive thinking and see this as a failure on their part..
I suppose much of the above is simply common sense, and being sensitive to the patient’s needs. In this regard, an experienced family physician who knows the patient and the family is invaluable. Ready access to palliative care personnel and expertise also is invaluable; but in all cases, time with the patient and the next of kin is essential. Knowing the patient, knowing their likes and dislikes, their beliefs, their character and nature, can be incredibly useful at times. I recall a cowboy who simply felt better with his boots on (which gives credence to the expression of wanting to die with your boots on). One of my patients in a care facility became restless when he was turned. He settled quickly if the bed was turned in such a way that he could “see” his family was in attendance. Obviously it bothered him to sense that he was all alone when he was facing a blank wall. Another rancher patient was extremely restless until his bed was turned and the head of the bed elevated in such a way that he could see the expanse of the countryside outside of the window. Was he claustrophobic, or did he simply feel peace when he was able to see the great outdoors where he had spent most of his life. The bottom line was he required less medication and he was at peace in this position.
As physicians and care givers, we have become very competent in the technologies of end of life care. Today, palliative care physicians and care givers understand that management of suffering is paramount. Sometimes I think we are almost too enthusiastic about our pain management. I remember one situation where the patient was comfortable except when she was moved. During those times she grimaced with pain and sometimes would cry out. The pain only lasted a few minutes after the positional change and then she was comfortable again. As positional changing is imperative for bed-bound patients to prevent painful bed sores and tissue break down, and because the compassionate nursing staff wanted to keep her comfortable, they pressured her to receive an injectable pain killer to make the positional changes more tolerable. The patient didn’t want any pain killers because they interfered in her “being with-it” and her ability to visit with her family for three to four hours, and besides, she said, her pain on turning lasted only a few minutes. It became necessary for me to intervene on the patient’s behalf. Although the turning and pain response on the part of the patient was disturbing to the nursing staff, the needs of the patient to maintain “control” over their life, in this situation, was paramount. When one is dying, I’m certain that the sense of loss of control can be the most devastating part of the process. Thank goodness we now have pain control measures that have rapid onset and only last 30 minutes, to deal with these scenarios.
I have found that the profound weakness that accompanies end of life time is perhaps even more demoralizing than pain. Can you imagine going from an independent, in control individual, to a helpless person needing help to turn over in bed? In medicine we have made tremendous strides in the treatment of pain, nausea, depression, and exhaustion, but weakness has remained untouchable frontier. Your strength, both physically and mentally, assistance, and willingness to be there and help, are the main resource at the present time for such a patient.
As I have previously mentioned, we teach care givers the emotional process that patients go through when they are given the news that they have a terminal illness (denial, anger, negotiations, acceptance), but I have not read anything on two common emotions that I have encountered in my practice-----shame and guilt. In my experience, this is more common in people with a significant sense of responsibility. In matters of health, no one leads the “perfect” healthy life style. It is a short step, then, for some people to reflect on, and feel guilty about, their past disregard for healthy life styles (eg. smoking) and as a consequence, the pain caused to their loved ones. The surviving spouse may also feel guilt about their contribution to the illness (second hand smoke). It has been my experience to put these matters should be openly discussed and put to rest quickly. Nevertheless, as friends, we should assist in emphasizing the things that really matter. For the most part, unresolved guilt issues simply drive people apart.
The shame aspect certainly is more difficult to cope with. So much attention is paid to image in today’s society that it is difficult to suddenly say “appearance doesn’t matter”. Fortunately, this seems to be primarily a problem during the denial, anger, and negotiating stages of dying and when the patient and family accept the situation for what it is, they seem to amazingly focus on those things in life that truly matter. Is this what is meant by “when we are about to loose our life we actually may gain it”?
In closing, people often ask me how I could cope with the emotional impact of caring for dying people. I believe there are two answers to this. Firstly, always look at the patients needs, not your own. And secondly, and possibly as a corollary to the first reason, I have found the people that I have cared for (and their friends and families), under these circumstances, have always amazed me with there courage, understanding and appreciation. I recall one Dec. 24th, a patient whispering to me: ”You should be home with your family”. He passed away four hours later.
My hope is that by my relaying my thoughts and experiences, you will be able to meet these challenges in the future in a way that is less stressful to you and most helpful to your loved one.