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Best wishes quotes for cancer patients

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Best wishes quotes for cancer patients
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The following selection of get well wishes for cancer patients will help to encourage a quick recovery while letting the The best is yet to come.

When you’re writing a get well card it’s important to select your words wisely. Your well wishes have the power to aid in someone’s recovery and bring a smile to their face. By shining light on the positives and looking to the future you will make someone feel better with your kind words, but it’s not always easy to know exactly what to say. Before you fill the blank space of your greeting card, you’ll need to consider three things: the person you are writing to, your relationship with them, and the condition they are in. Whether you’re looking for inspirational quotes, get well wishes after surgery, or funny get well wishes to lift spirits, we have you covered with everything you need to know about what to write in a get well card below.

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What To Write In A Get Well Card

Writing thoughtful get well wishes and adding inspiring get well soon quotes to your greeting card is the best way to show someone you are thinking of them during a tough time. Remember that personalization is key and a heartfelt get well soon message can do so much more than any other gift.

1. Use A Warm Greeting To Start Your Get Well Sentiment

Take into consideration who you are writing to as well as circumstance. Both of these details are important and will set the tone for your message. “Dear” is a safe standby, but you can choose to go with a warmer greeting if you are writing to friends, family or others you may have close relationships with.

2. Write A Few Get Well Wishes

Start your card off with well wishes that are specific to what the recipient is going through. Adding statements that instill hope and optimism will be a fundamental part of helping someone heal. Don’t dwell on the negatives, make sure that your wishes stay positive, upbeat and have the power to inspire.

3. Express Your Love In Get Well Messages

If you are close to the card recipient, write a get well saying that expresses your love and gratefulness. Add an anecdote or inside joke that the two of you share to ensure you will bring a smile to their face. It’s also easier to write a funny get well wish and add humor to the greeting card if you and the recipient are close.

4. If Religious, Send Prayers in Get Well Messages

If you share a religious bond with the card recipient, let them know that they are in your prayers. It can be encouraging for someone going through something serious to know that they are in your prayers. Shining light on the faith you share is another way to show your compassion.

5. Use Get Well Quotes

Use quotes to offer encouragement. Change someone’s habits, mind and emotions with an inspirational quote they can identify with during a difficult time. Don’t be afraid to borrow a few words from an award winning author or inspirational figure. Quotes are the perfect way to offer encouragement.

6. Remind Them You’re Thinking of Them

Tell them you’re thinking about them. Letting someone know that they are in your thoughts provides a sense of love and support for someone who is going through a hard time. Comforting words can make all the difference to your get well card message.

7. Be Empathetic

Try to understand this person’s feelings or emotions and make sure that your message and tone reflect that. Putting yourself in someone else’s shoes will help you find the right words to say. Avoid overthinking this part of your message and don’t let the fear of saying the wrong thing cause you to say nothing at all. However, do your best to avoid minimizing what the person is going through just because you may be able to relate.

8. Offer Your Support

When someone gets ill or becomes injured, even day to day activities become difficult to do. If you have the time and opportunity to help out in any way, offer to do so in your get well soon card. Some ideas include helping out with meals, cleaning up around the house, offering childcare or anything else that you see fit for the situation. In most situations, people won’t ask for help so you offering to do so is a great way to show that you care. Be specific when you are offering to help out and make sure that you follow through with what you’ve offered.

9. Sign Off With A Warm Closing

You’ll want to close your get well card with a warm closing. For example: “thinking of you”, “take care” and “wishing you healing” are all perfect ways to wrap up your card.

Get Well Wishes

Common get well wishes include mentioning hopes for feeling better, speedy recovery messages, and words that let the card recipient know that you are thinking of them. Short and sweet get well wishes are the perfect thing to write in a get well soon card for any recipient. Use one of the wishes below or try combining a few to create a longer and more meaningful message.

Examples for Get Well Wishes:

  • Feel better soon!
  • Hope you feel better soon.
  • Hoping you find strength with each new day. You are in our thoughts.
  • Have a speedy recovery!
  • I hope each new day brings you closer to a full and speedy recovery!
  • May good health envelop you, spurring a quick recovery.
  • Thinking of you lots and hoping for your speedy recovery.
  • We’re all thinking about you and wishing you a speedy recovery.
  • Hang in there, better days are coming.
  • Hope you feel a little better every day.
  • Sending good, healthy vibes your way.
  • Sending hugs and love!
  • Remember to just take it one day at a time and in no time, you will be completely healthy and smiling once again.
  • You’re in all of our warmest thoughts as you recover from your accident.
  • Best wishes for a little progress and a little encouragement everyday during your recuperation.
  • Best wishes that you will soon be back to doing all the things you love.
  • May the good wishes and warm thoughts of those who care about you send a little cheerfulness into your world and help you feel better.

Religious Get Well Wishes And Verses

Adding religious get well wishes or verses to your get well note is a great way to share your faith and encourage someone in their spirits during difficult times. These well wishes serve as a shining light that can often provide a sense of personal comfort when someone is struggling. Try out one of the religious sentiments below and let your card provide a source of strength to those who could use a few words of encouragement.

Examples of Religious Get Well Wishes:

  • Praying for you!
  • You are in my thoughts and prayers during your time of recovery.
  • As I close my eyes to pray every night, my only request is that God will heal you speedily. I wish you a quick recovery!
  • Thoughtful prayers are being sent your way with the hopes that you will feel better soon.
  • Thinking of you during this time of illness, and praying you will find strength in the Lord and his never ending supply of love.
  • God cares and hears our prayers, and I am praying for you today!
  • Know God promises to give strength when you need it and that we are praying for you to have strength and peace as you face health challenges.

Discover the best inspirational cancer quotes and sayings. whether you're a daughter, mother, sister, friend, coworker, doctor, or patient.

Get Well Wishes: What to Write in a Get Well Card

best wishes quotes for cancer patients

Hurray - last round of chemo card

Customize: Inside text only
Inside Text: i’m excited and very proud of you! let’s celebrate your fabulous achievement!
Artist: Corrie Kuipers
Product Id: 159790

End of Chemotherapy Survivors’ Bell Congratulation…

Customize: Inside text only
Inside Text: Congratulations on your last chemo treatment! Such an important milestone on your road to recovery and living cancer free. I bet you rang that bell with great jubilation!
Artist: M. Rosso
Original image by:
mirceab/Bigstock.com
Artist Notes: Ringing the Cancer Survivors' Bell is an important milestone signaling the end of Cancer treatment and starting the road to recovery and living cancer free. Celebrate this important milestone with someone fighting cancer who has completed their last and final chemotherapy treatment.
Product Id: 1335024

Hurray! End of Chemo - Chicken Cheerleaders card

Customize: Inside text only
Inside Text: You made it! The chemotherapy is over, and I hope you feel like celebrating! Let’s get together and do something special
Artist: Corrie Kuipers
Artist Notes: When cancer treatment ends, patients still need lots of support and encouragement. Sending greeting cards helps, especially cards designed especially for them.
Product Id: 664209

Breast Cancer - Last Chemo Congratulations - You a…

Customize: Inside text only
Inside Text: COURAGE. BRAVERY. DETERMINATION. PERSEVERANCE. FAITH. Your bravery is beautiful. YOU are beautiful. Congratulations on your last chemotherapy treatment!
Artist: Kathleen Johnson
Artist Notes: Congratulate someone on their last chemotherapy treatment with this calligraphy style typography design that features a white breast cancer awareness ribbon as the "L" in the word, "Beautiful." Subhead reads, "It's who you are. It's what you've done." Background is watercolor painted splash in pink hues. Inside can be customized with your own message.
Product Id: 1507784

No More Chemo Yay! Colorful,Fun Dots and Arrows ca…

Customize: Inside text only
Inside Text: Congratulations on having your last round of chemo! I am so happy for you and am so proud of the strength you showed during this difficult time in your life!
Artist: Betsy Bush
Artist Notes: Say congratulations on the end of chemo with this colorful design full of hot pink polka dots,trendy blue chevrons and blue.green and pink arrows on a bright yellow background.Original digital art design by Betsy Bush for Dragonfire Graphics.
Product Id: 958105

You did it - chemo treatments over card

Customize: Inside text only
Inside Text: the chemo treatments are over - you did it! I hope you’re in the mood to celebrate because I sure am!
Artist: Corrie Kuipers
Artist Notes: Tip: Include a pre-paid calling card, or gift certificate for gas (often a major expense), retail stores, groceries, movies, DVD rental, restaurans - especially those with an on-line shop and/or delivery service
Product Id: 188119

End of Chemo Treatments - Long Journey card

Customize: Inside text only
Inside Text: Congratulations on making it through your cancer treatment. I admire your incredible strength.
Artist: Pattiann Malynn
Artist Notes: Flowers against a peach and plaid background to congratulate someone on the last of their chemotherapy treatments.
Product Id: 161247

For Cancer Patient Last Round of Chemo Greeting Ca…

Customize: Inside text only
Inside Text: Congratulations on receiving your last round of chemotherapy. It was a long road and you have done a great job. We are so proud of you.
Artist: � Sheryl Kasper
Artist Notes: Cancer Survivor / end of treatment / last round of chemotherapy greeting card, with illustration of a bear with arms up in celebration of last chemo. Inside verse can be customized during the checkout process. Sheryl Kasper Card Store
Product Id: 806206

Last Round of Chemo Greeting Card-Sad Dog with IV-…

Customize: Inside text only
Inside Text: Glad to hear you received your last round of chemo. Give your body a chance to rest for a while, and you will soon feel back to normal. Congratulations!
Artist: � Sheryl Kasper
Artist Notes: Congratulations greeting card on your last round of chemo with Illustration of a puppy dog hooked to an IV receiving last round of chemo. Design is appropriate to give to anyone of any age, Inside verse can be customized during the checkout process. Image copyright Sheryl Kasper
Product Id: 723112

Cancer Patient Congratulations on Last Chemo Treat…

Customize: Inside text only
Inside Text: Way to go! Congratulations!
Artist: Tammy Moody
Artist Notes: Image courtesy of Tam Moody This is a congratulations on your last chemotherapy treatment card for cancer patients. It is a female specific card for cancer patients who have reached the end of their chemotherapy sessions to help them celebrate a milestone in their fight against cancer. It features little smiling cancer patients who are receiving chemo treatments. The patients are wearing little hats or have very little hair and are wearing colorful dresses with matching shoes. Request a card for other occasions with this design!
Product Id: 806903

Last Round of Chemo Treatment Greeting Card-Hooray…

Customize: Inside text only
Inside Text: Congratulations on completing your last round of chemo! You’ve been through a lot lately and we are glad it is all behind you now. Let’s celebrate this wonderful accomplishment together.
Artist: � Sheryl Kasper
Artist Notes: Send a little happiness with this "Caring Cancer Card", with retro girl breast cancer design, to encourage and inspire your loved one who is battling cancer. I pray these cards will brighten your loved ones day. Inside verse can be customized during the checkout process. Copyright Sheryl Kasper
Product Id: 831150

No More Chemo Math Problem with Stars card

Customize: Inside text only
Inside Text: AWESOME! Congratulations on having your last round of chemo! I am so happy for you and am so proud of the strength you showed during this difficult time in your life!
Artist: Betsy Bush
Artist Notes: Say congratulations on the end of chemo with this colorful design of stars on a bright yellow background.Front sentiment is a math problem NO + MORE + CHEMO =. Inside sentiment is Awesome! Congratulations on your last round of chemo.Original digital art design by Betsy Bush for Dragonfire Graphics.
Product Id: 958123

Last Chemotherapy Congratulations Mountain Lion Co…

Customize: Inside text only
Inside Text: You finished your cancer treatment, congratulations! I so admire your strength!
Artist: �Doreen Erhardt
Artist Notes: Gorgeous mountain lion an animal known for representing courage and power, perfect for the cancer patient and offering a strong message of support.
Product Id: 1177122
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Get well wishes: what to write in a get-well card

best wishes quotes for cancer patients

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Here are the best collection of Wishes about Best Cancer Birthday Wishes And Quotes. Those peoples who born under the date of June 21 to July 22.  Cancer is very emotional and sensitive, and they care about family and home. Cancer is sympathetic and is very attached to the people who surround him. People born under the Cancer sign are very loyal and empathetic people, able to empathize with your pain and suffering. Show your love for your Cancer Friend, Family Member, and Loved One by dedicating our Best Cancer Birthday Wishes And Quotes. Hope you enjoy it.

Cancer Birthday Wishes And Greetings

1 ) Sometimes You are too moody to handle but at the same time you have a very soft heart and I am proud to have a friend like you, Wishing you a very happy Birthday.

2 ) Continue climbing to greater heights. You are a star! A Fabulous and memorable happy birthday.

3 ) Cancerians are not frightened of being silly and they obsess affection. My dear friend I am with you because we both together make a best couple. Happy Birthday to you .

4 ) I know that cancers are forgiving and very kind. Wishing my kind and supportive friend a very Happy Birthday.

5 ) Wishing my patriotic friend a very Happy Birthday. May you live long my dear cancerian friend.

Cancer Birthday Wishes For Cancer People/Best Cancer Wishes

6 ) I know that cancerians are the most thoughtful persons and I am feeling tremendously fortunate to have such a compassionate friend in my life. Wishing you a very Happy Birthday.

7 ) Cancers loves being appreciated and appraised by others. Wishing my emotional friend a very Happy Birthday.

  • 8 )  Cancers cannot bear being ignored and I want to say sorry to you I have every ignored and hurt you. Wishing you a very happy Birthday.
  • 9 ) Cancers have temper losing problem and you my friend always lose your temper on me but I have issue with that because you are my friend. Wishing my friend a very Happy Birthday.
  • 10 )  I know cancers are passionate, thoughtful, realistic and imaginative. And how can I underestimate such a friend who is cancer and has such an amazing personality with all these good qualities. Wishing you a very Happy Birthday.

11 ) Cancers really enjoy making other smile. Wishing my cancer friend a very Happy Birthday.

12 ) Not every person can gain the emotion of a cancer and I feel lucky that I am in your friend list. Wishing you a very Happy Birthday.

13 ) I hope that you will have a truly marvelous and joyous day with family and loved ones. Have a delightful birthday.

14 )  Wishing my most romantic, emotional friend a very Happy Birthday. Live long dear Cancerian.

15 ) Cancerians have beautiful soul and having pure soul is a gift of God. Wishing my best fiend a very Happy birthday.

Cancer Birthday Quotes And Sayings

16 ) You aren’t getting older, you are getting better. I wish you a wonderful birthday.

17 )  I know that a cancer loves you in a really different way but I think sometimes you must express about what you feel. I want to say that I love you and wishing you a very Happy birthday.

18 ) When a cancer choices a lover for themselves it is a very superior moment. And I am damn lucky that you selected me in your life as a lover. Wishing you a very Happy Birthday.

  • 19 ) I know that cancers are overprotective and I have no issue with that if you have such feelings for me. I am wishing my domineering friend a very Happy Birthday.
  • 20 ) Another year has passed, and let me just say how much we count on you, rather than count the years. I wish you a wonderful birthday.
  • 21 ) Wishing my most smiling, self-governing, bouncing, concerned and sensitive friend a very Happy Birthday. May you live long.

22 ) I know I have turned you silly many times by not expressing you that what I am thinking about  and by not giving you reply but today I am saying sorry for my behavior. Happy Birthday my Dear Friend.

23 ) I know that cancers have very good sense of humor and you my friend make me laugh when I am depressed. Thank you for turning my worst time into most beautiful memories. Wishing my cancer friend a very Happy Birthday.

24 ) Having a person like you has made my life so much easier. You are always there to carry me through my times of trouble. A Fabulous and memorable happy birthday.

25 ) I know that cancers are really good lie detectors and i cannot even dare to tell a lie in front of you because I know you will absolutely catch me red handed. Wishing my cancer Friend a very Happy Birthday.

More Happy Birthday Wishes For Cancer

  • 26 ) There is a word for people like you.. fun, cool, sexy, talented, attractive, you choose, They all apply! Have a delightful birthday.

27 ) Always giving and asking for little in return. that’s how Cancerians are. They are very passionate people, who are full of love. And simply love to love. It is too hard not fall in love with these people.

28 ) Let there be peace on Earth, and let it begin right after your birthday party. Have an amazing birthday.

29 ) You have not gotten any older in my mind despite the number of birthdays that you have had. A Fabulous and memorable happy birthday.

30 ) I know that cancerians cannot bear personal attacks and I have done this many times you and today I want to say sorry for all my mistakes. May you live long my dear friend.

31 ) Today is your special day, and it is a great time to celebrate all that you have done for me. I wish you the happiest of birthdays.

32 ) Cancers are most sympathetic, obliging and caring ones. I am lucky to have you a friend who is a cancer. I love you and I am wishing you a very Happy Birthday.

33 ) May you be blessed with total freedom, peace, success and security this year! Have a delightful birthday.

  • 34 ) May you always have enough happiness at your life to keep you sweet, enough trials and errors to keep you strong. Happy birthday!!!
  • 35 ) On your this birthday I want to tell this world that cancerians are the most honest and faithful friends. Happy birthday my dear Friend.

36 ) Hope you have a great day!.. I wish you more blessings in the year ahead.. and may you continue to grow each new day. Happy birthday.

37 )  I know that you are much curious about things and trust me that’s not your fault .This is all because you are a cancerian. Wishing you a very happy and prosper Birthday.

 

 


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Get Well Soon Messages - Visit this page and find some best and unique get well soon messages, SMS and wishes for a speedy recovery of.

Inspirational Quotes for Cancer Patients: Messages and Notes

best wishes quotes for cancer patients

Citation: Ohnsorge K, Rehmann-Sutter C, Streeck N, Gudat H (2019) Wishes to die at the end of life and subjective experience of four different typical dying trajectories. A qualitative interview study. PLoS ONE 14(1): e0210784. https://doi.org/10.1371/journal.pone.0210784

Editor: Alessandra Solari, Foundation IRCCS Neurological Institute C. Besta, ITALY

Received: February 7, 2018; Accepted: December 21, 2018; Published: January 17, 2019

Copyright: © 2019 Ohnsorge et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: The full transcripts from the interviews cannot be shared because of restrictions related to patient confidentiality and limitations of the patient consent. Our minimal data set consists of supportive material from the interview transcripts, which underlie the English quotes given in the paper. We have therefore included, in the Supporting Information files, longer interview excerpts in the original language (German) around the quotations in the article.

Funding: We are grateful to Oncosuisse (grant 01960-10-2006) and to the Gottfried und Julia Bangerter-Rhyner Stiftung for funding the first part of the study (oncology,) and to the Swiss National Science Foundation/NFP 67 end of life (grant 406740 145089) and the Förderstiftung HOSPIZ IM PARK, Arlesheim, for funding the second part of the study (non-oncology). The pilot study was made possible by the Förderstiftung HOSPIZ IM PARK, Arlesheim and the Freiwillige Akademische Gesellschaft Basel (FAG).

Competing interests: The authors have declared that no competing interests exist.

1. Introduction

Research shows that wishes to die (WTD) appear relatively frequently in patients undergoing end-of-life care (7–40%) [1]. These wishes often have multidimensional reasons, hold subjective meanings, and consist of diverse and dynamic intentions, which in addition are weighed against each other over time [2][3][4]. A WTD does not always contain a wish to hasten death [5][6][1]. It is not uncommon for patients’ wishes with regard to living or dying to change from WTD (and even wishes to hasten death) into wishes to live and also the other way around, even in the final weeks of life [7][8][9][10]. All this might suggest that for many patients, thoughts of dying and even wishes to die, transient or not, might be part of a process of coming to terms with their situation at the end of life, of facing loss, suffering and finitude. For several reasons, patients often face difficulties in talking frankly about these thoughts or wishes to health professionals. However, not addressing these ideas can lead to isolation and eventually to physical, emotional or spiritual needs not being met [11]. Hence, we believe that regular sensitive invitations to communicate and explore patients’ needs and wishes–if patients so desire–should be standard in end-of-life care.

In recent years, a large body of research has been published that gives insight into the etiology and subjective experiences of WTD and communication around these wishes [11][12]. Much of the research has either been done with cancer patients, or without distinguishing pathologies. Relatively little is known about WTD in non-cancer patients (with the exception of some patient groups, such as people with amyotrophic lateral sclerosis (ALS) or the frail elderly). We can only speculate about whether or in which way the different diseases’ associated trajectories of dying [13] influence the subjective experience of WTD. We can hypothesize that the particular challenges in the subjective experience of different dying trajectories set the conditions against which WTD are articulated. Particular illness-related symptoms, or typical psychosocial concerns and experiences related to particular dying trajectories, might contribute to or trigger a WTD. But while there is some quantitative knowledge of the experience of different dying trajectories and the various types of distress and dependencies [14][15], we know of no studies looking at how terminally ill or elderly patients themselves experience particular dying trajectories in relation to their WTD. More in-depth knowledge could facilitate communication about end-of-life wishes and be helpful in assessing particular patients’ needs and fears more accurately and responsively. Hence, within a study of WTD in terminally ill and frail patients, we investigated subjective accounts of WTD statements in relation to experiences of different disease and dying trajectories. We did this in four patient groups that typify dying trajectories in palliative care [16]: persons with cancer, neurological diseases (ALS, MS), organ failure (heart, lung), and elderly, frail persons with multiple pathologies. Here we present results on the interrelation between subjective understandings of dying trajectories and the WTD.

2. Overview of the literature

Incidence

The incidence of WTD is best characterized among cancer patients. It is known that 7.7% to 10% of cancer patients express a WTD [17][18]. Research results vary greatly, however, depending on how the ‘wish to die’ is defined. The prevalence of WTD in terminally ill cancer patients ranges from 44.5% of patients with a moderate desire to die [1], to 8–17% with a more persistent WTD [17][18][19], and 10.6% who express a serious desire for assisted dying [20]. In a Canadian cross-sectional survey of 377 cancer patients, 69.5% had no desire to die, 18.3% expressed occasional transient thoughts, and 12.2% said they had a genuine desire to die [21].

In persons with neurological diseases such as amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS), WTD statements seem to be more frequent. A study in Switzerland and Germany [22] showed that 44% of ALS patients interviewed had already thought once about suicide, every second patient could imagine asking for assisted dying, and 14% currently had a WTD. This corresponds to other international findings in the quantitative literature [23][24][25][26][27][28]. Only one study found that wishes to hasten death was low in this group and even decreased within one year despite physical decline [29]. In comparison, it is reported that 10–20% of elderly persons express a WTD [30][31][32][33][34][35]. Patients with organ failure seem to be comparatively under-researched. A Dutch questionnaire-based study [16], in which physicians reported on patients with different pathologies who made a request for euthanasia or PAS, refers to 0.5% of all heart failure patients dying from PAS compared to 5% of cancer patients and 20% of ALS patients in 2005.

Motivations for wishes to die

In cancer patients, pain is a frequent, important symptom, and patients mention it as a reason for their WTD [14]. Pain and fatigue are also reported as the most important causes of unbearable suffering, leading to a request for euthanasia in cancer patients [16]. However, under palliative care and with adequate pain control, pain is less frequently stated as a reason, and the motivations given for a WTD include existential-spiritual and non-physical ones [12][17] such as depression, demoralization, hopelessness, a sense of abandonment, fear of the future, fear of losing control or the sense of self, the perception of being a burden to others, poor family cohesion or social support, high levels of anxiety, and existential suffering [36][37][38][39].

ALS patients gave fear of suffocation and dependence as the main causes of unbearable suffering leading to a WTD [15]. While heart failure patients most frequently gave somatic issues (especially pain and fatigue) as causes of unbearable suffering, ALS patients reported less somatic and more psychosocial motivation than other patients. Hopelessness and end-of-life despair, much more than depression, are frequently discussed as important triggering factors underlying a WTD in ALS [40][41][42] (for hopelessness in ALS in general see [43][44]). The findings of the Dutch research [15] support those of other studies, which identified the fear of being a burden to others as an important triggering factor for a WTD in ALS patients [29] [40]. The fear of dependency on others as well as becoming immobilized were also mentioned frequently by all patient groups (ALS, heart failure, frail elderly) [15].

In elderly patients, the WTD is associated with being female, not being in a partnership, greater frequency of depressive symptoms, loss of autonomy and controll, financial problems, restricted social network, urinary incontinence, a negative perception of one’s own physical health, polymorbidity, higher levels of stress and sleep problems, and living in a nursing home [30][45][46][47][48][49][50]. In the elderly, loneliness and social disconnectedness in particular play an important role in WTD, while the presence of social support can effectively counteract a WTD [9][49][51][52]. Untreated or undertreated depression might cause a WTD, and while most authors agree that underdiagnosed depression in the elderly is a problem, clinical depression is not always present in elderly people with a WTD.

Persons with heart failure state the experience of dyspnea, dependency, and the knowledge that suffering will get worse as the main causes of unbearable suffering leading to a WTD [15]. The disease trajectory of organ failure is typically characterized by an up-and-down of crises and subsequent stabilization at a slightly lower level of physical wellbeing, which makes prognosis in palliative care difficult (which crisis will be the final one?). Research depicts these patients as trying to live “daily life as usual” and because of that trying “to deny the threat to life for as long as possible” [53]. Because of prognostic uncertainty and so as not to destroy patients’ hope and motivation to overcome the next crisis, it is well known that doctors tend to avoid talking to patients about their prognosis [54][55][56]. “Prognostic paralysis” [57] is believed to impede open communication, and advanced care planning and is known to cause delayed and significantly reduced enrolment into palliative care (7% of all patients with heart failure versus 48% of all cancer patients in primary care enrolled in palliative care in the UK in 2009 [54]).

3. Method

Our method relies on a phenomenological-hermeneutic framework and is based on Interpretative Phenomenological Analysis (IPA) [58]. The idiographic approach of IPA enables the in-depth investigation of how persons make sense of and attribute meaning to their individual experiences. Such an approach has the advantage of studying in depth the individual person’s thoughts, wishes and actual experiences in the final phase of life, and allows insights into the complexity of their WTD. We conducted and analyzed qualitative interviews with patients and their caregivers, in order to investigate wishes to die or to live from the subjective perspective of terminally ill or elderly persons in palliative care. The results that we present here derive from one of the main categories of analysis (‘WTD and subjective experience of dying trajectories’). In order to compare the data between the different patient groups we then applied an analytic tool (derived from the ‘anatomy of a WTD’ described below) that we developed in the first part of the study, which involved 30 cancer patients, their physicians, nurses and relatives, and was based on a grounded theory approach [59, 60].

Sampling: For each patient, we also interviewed a close family member (with the patient’s consent), and always a physician and a nurse (total interviews n = 248). For the detail of the sample see Tables 1 and 2.

The patients were situated in a variety of palliative care facilities: a hospice, a palliative ward, specialized units in acute care hospitals, a clinic for neurological diseases, several nursing homes, or outpatient palliative care. Where possible, we conducted more than one interview with the patient. The patients interviewed satisfied the following inclusion criteria: persons (a) with incurable and advanced tumors, neurological disease, organ failure or frailty/old age, (b) in a palliative situation (defined by the Gold Standard Framework (http://www.goldstandardsframework.org.uk/), (c) who were already aware of the incurability of their condition or palliative state, (d) whose primary physician had consented to their enrolment in the study (patient protection), (e) who had sufficient language skills to participate in the interview, and (f) who were cognitively in a condition to participate in the study.

For the informed consent procedure, patients were approached by their physician and informed orally and through an information brochure about the study (see S1 and S2 Supporting informations. Patient information sheet in German and English). Patients expressing interest were contacted by the research team. The interviewer answered participants’ questions and obtained written informed consent before the interview started (see S3 and S4 Supporting informations. Patient informed consent form in German and English). For some interviewees with advanced neurological diseases who were unable to sign the informed consent, we audiotaped oral informed consent at the beginning of the interview. Written patients’ informed consent was also requested for the collection of information from medical records. Strict confidentiality between interviews was guaranteed. For interviews with relatives, we asked the patients for their agreement and, if they agreed, to indicate which of their relatives they wished to be interviewed. Relatives and healthcare professionals were contacted by the research team, and gave written informed consent before the start of the interview.

Each patient was tested for depression (anamnesis and screening by Robinson’s mini-screen for depression [61] and the Beck Depression Inventory in suspected depression [62]), although the existence of treated depression was not an exclusion criterion. We deliberately did not restrict inclusion to patients who had previously expressed a WTD, because we also wanted to investigate the genesis of WTD or situations in which a WTD was present but not known to others. We deliberately did not investigate wishes to hasten death (WTHD) alone, but wishes to die (WTD) in general, as we believe that there are various forms of WTD and that expressions of WTHD should be situated and interpreted within the larger context of patients’ current wishes and concerns.

Participant enrolment happened in parallel with the ongoing process of data interpretation. At the outset, we included patients broadly, with or without known WTD according the criteria mentioned above. In the course of the study, we chose interviewees increasingly more selectively, involving more persons who had already expressed a WTD. The first part of the study focused on WTD in cancer, while in a second phase we looked at dying trajectories in non-cancer patients. Of all patients included in the study (n = 62), 30 had cancer. The other 32 fell into three groups: neurological diseases (mainly ALS and MS; n = 10), organ failure (especially lung and cardiovascular; n = 11), and frail elderly patients (n = 11). For patients’ characteristics see Tables 1 and 2. Both study phases (cancer and non-cancer patients), which are evaluated jointly here, were approved by the Ethics Committee of Basel (EKBB).

The semi-structured, face-to-face interviews lasted between 30 and 120 minutes and focused on the experiences, ideas and wishes of the patients with regard to their dying. The interviewers were not involved in the care of the interviewees; KO, NS, HGK and two other interviewers (Lucia Stäubli, an art therapist in palliative care and Heidi Gass, a palliative care nurse) were either trained and/or experienced from the pilot and first interview study, or took university courses in qualitative research. KO, NS, CRS and HGK were part of the main research team and took part in the interpretation of the transcripts. An interview guide and a detailed description of the methodology can be found in the appendix to [2]. A preliminary version of the interview guide and the analytical methodology were tested in a pilot study and continued to be refined throughout the entire interview period. A major revision took place after the completion of the first part of the study with 30 oncology patients. Interviews with nurses, doctors and relatives took place shortly after each patient’s interview, and were based on an adapted interview guide focusing on the patients’ experiences, i.e. they explored these individuals’ perception of patients’ experiences, views and wishes with regard to dying, and the communication about them. All interviews were audiotaped and fully transcribed by two transcribers who were not involved in the interview process but had been trained through the pilot and first part of the study on cancer patients. The medical records helped to characterize the medical circumstances in which the patient developed his or her wishes.

For the analysis, we adopted a case-by-case approach. The transcripts of each patient with the accompanying transcripts of the family and professional caregiver interviews were first read and open-coded by each of the authors independently. Analysis was supported by MaxQDA11. The emerging themes found by individual analyses in each case (consisting of the patients’, the family’s and the professionals’ interviews) were then discussed by all authors in interview interpretation sessions. In-depth discussion of individual interpretations in the research group helped to clarify areas of interest and possible preconceptions [58] and usually lasted until we reached a shared interpretation of each case. The analysis led to the elaboration of emerging themes and the selection of the most important themes, set by the interview guide and the underlying research questions, first for each case and in a second step by comparison between cases. We continuously compared cases in terms of the set themes (those defined by our research questions) and emerging themes. Several emerging themes were selected and investigated in depth over the study period and the entire data set.

This article is based on our findings about the ‘influence of diverse dying trajectories on the WTD’. For this analysis, we used a theoretical model (the ‘anatomy of a WTD’ model) that we developed during the first part of the study on cancer patients (see [63][64]). The development of this model from the data was based on a constructivist approach to grounded theory [60] (see Fig 1).

The ‘anatomy of the WTD’ describes three different dimensions that can be investigated in order to understand the meaning of a WTD for a patient. These dimensions are: a) the intention of the WTD: what this wish aims for; b) the motivations behind a WTD: why the wish is there, i.e. subjective reasons, meanings or functions of the WTD for the patient; and c) the social interactions that might influence a WTD. For this publication, we applied these three dimensions as an analytic tool to investigate the similarities and differences in WTD between the different trajectories. We then wrote outlines of characteristic patterns for each trajectory group. In order to identify and highlight the differences, we extracted quotations about the ‘influence of diverse dying trajectories on the WTD’ and ordered the emerging themes under the superordinate themes given by the ‘anatomy of a WTD model’. This enabled us to compare the data of the second part of the study on non-cancer patients with those from cancer patients. In doing this, we especially looked at the differences that correlate with the circumstances of the different disease groups. We were aware of potential shortcomings when comparing data in different disease-related contexts [65].

In the general analysis, we took the interviews of relatives, physicians and nurses first as independent perspectives, but then investigated the interactions of the family and professional caregivers with the patient in terms of the WTD and the co-construction of knowledge and wishes: what do they know from each other? How do they communicate? How does communication happen? Which moral values, concerns or expectations influence the interaction and the WTD, and whose are they? How do people react and counter-react, and how does this shape the WTD? etc. In this paper, however, we focus primarily on the patients’ perspective and on the question of whether and how their subjective experience of illness shaped their WTD. The co-constructive aspect of the WTD is represented here mainly in the sub-theme of ‘not wanting to be a burden to others’. In other papers [2] [7], we have highlighted how WTD are shaped by social interactions between patients, their families and their professional caregivers.

In addition to individual memos made during coding, we prepared theoretical case memos based on the discussions within the research group for each case analysis and recorded the team’s interpretation of important key themes. We also prepared memos of the final analysis of the trajectories and according to the above mentioned ‘anatomy model.’

The present paper originated from one of the initial research questions: Do the different dying trajectories differentially influence the WTD, and if, so how? This paper presents our comparative findings from all four groups investigated in terms of the three dimensions of a wish to die represented in the WTD model, focusing particularly on how the patients’ subjective experience of their illness and dying influences their WTD.

4. Results

WTD express very personal concerns and processes of confrontation with one’s own death. In these processes, individual experiences, personal moral understandings, relationships and cultural issues play an important role [3][63]. However, in the subjective accounts of persons going through the same illness or frailty due to very old age, we found that interviewees explaining the presence of their WTD expressed recurring considerations and experiences connected to the particular illness or health status alongside other more individual concerns. These considerations do not explain the WTD completely, but give important information both about the challenges for particular patient groups that might lead to a WTD, and what to investigate in more detail once a WTD is experienced. This information sometimes differs from third-party observations or more objective descriptions of the dying trajectories [13]. What we present here as ‘trajectories’ refers to the similarities we found in the subjective experiences of people with the same illness in terms of their explanation of their WTD. In the introduction to each subgroup we describe general features of the experience of a particular illness as reported by our interviewees (patients). This description is based on the entire data set of patients with the same illness. The results for the WTD associated with this particular illness, however, are based only on the patients who expressed a WTD.

4.1. Wish to die and the experience of dying in patients with neurological diseases

Our study included 7 patients with ALS, 2 patients with multiple sclerosis (MS), and 1 patient with inclusion body myositis. All patients were aware that their progressive disease would, in the foreseeable future, present them with challenges and circumstances of dying that would require them and their families to make major decisions. Most of these people were able to rely on a well-established web of healthcare support and advanced care planning with their professional caregivers. All the ALS and MS patients had been told by their healthcare professionals that they would need to decide at some point in the future about starting artificial nutrition and hydration or respiration support. Depending on the support and quality of information given by their healthcare professionals, they knew about the medical care support they could count on. Many of our interviewees with neurological disease were concerned with the question of how dying could happen in a dignified way under these particular circumstances. Their ideas about dying were often shaped by these concerns. Patients felt supported by contact with other patients or with self-help groups that were offered by the competence center.

Intentions.

All six persons with neurological disorders who had a WTD formulated a hypothetical WTD (i.e. not for the present moment but for the future, in a situation when life became unbearable for them). One person, at the moment of the interview, had a strong desire to die but without wanting to hasten death. He said: “Whether I’d have the courage [pause] to kill myself, I don’t know. But I would genuinely like to fall straight down dead.” (P5-II). (For the larger conversational context for all quotes in the German interviews, see S5 Supporting information. Original German quotes in relevant interview context). A single male patient (P32-II) made concrete plans to hasten death through a right-to-die organization. Others said they had long been members of a Swiss right-to-die organization and considered contacting them in future; however, these choices seemed farther away for them. Four had temporarily experienced an active wish to hasten death during a moment of crisis (P5-II, P8-II, P9-II, P34-II). For example, during a respiratory crisis one woman with advanced ALS reported asking her husband for a barbiturate to end her suffering: “Then [during the acute respiratory crisis] I said to my husband, now I want a tablet of some sort and pff! You can’t get them [tablets/barbiturates].” (P8-II). However, most of these patients, except P5-II, 67 years old, who had had MS since adolescence, said that they had moments or aspects of life they also enjoyed, and expressed a wish to live alongside their WTD.

Motivations.

Patients with neurological diseases explained their WTD in terms of their worries about future situations or conditions they believed would be too burdensome. They were very aware that these situations would probably occur as part of terminal illness. Mostly, they feared being entirely paralyzed, dependent on external respiration, having pain, or not being able to talk, walk or turn over. For example, a woman aged 66 (P8-II), with first manifestations of ALS 6 years ago including swallowing disorder, esophageal spasm and dyspnea, stated in the interview:

“Yes, I think, after a certain point there won’t be any more alternatives (…) if even every breath is a burden, so when you can’t move in bed on your own, I think, there are situations where that becomes simply unbearable. (…) [if you] can’t eat any more, can’t speak any more (…) well, then you lie there and get sore from lying, they turn you, hardly have you been turned when–ah–everything hurts.” […] “Then I would say the point has come when, I just have to [say that it] isn’t life any longer. […] And if you then help it along a little, I think that’s legitimate (…)”

(P8-II)

It was not clear what she meant with “help it along a little”. Assisted suicide was not an option for her.

Total dependence and the “image of a total loss of sovereignty” (son of P32-II) was expressed as their greatest fear by nearly all of our interviewees with neurological diseases. Some of them also feared being a burden to others. A patient (P32-II), 78 years old, widowed and living alone, with initial ALS manifestation 1.5 years ago and rapid muscle wasting, considered hastening death through a right-to-die organization when he had to leave his home. If he were totally dependent, life would lose meaning for him: “If I’m no longer free and can’t do anything on my own, I’m totally dependent, then I would probably feel that my life didn’t have much meaning anymore.” (P32-II). But he also explained his WTHD by saying it would be important to him for his family and friends to remember him in a state where they could communicate with him: “And I don’t really want to waste away miserably. But to leave this world in a state where I can remain somewhere in the memories of my children and my friends and so on as someone who, well, you could talk to and who was reasonably normal.” (P32-II) He died five months later in the emergency ward of an acute hospital from respiratory decompensation.

One male patient, who suffered from advanced MS, was a wheelchair user and lived in a long-term care institution, with his daughter as the only person caring for him outside the institution. He explained his acute WTD (without wanting to hasten death) by his experience of the radical loss of independence and decreased quality of life. His statement resounds with a sense of loss of dignity, and shame about his situation:

“How it is now, that’s just, for all of it, for wiping your bottom, to pee you need a bag… You just always need help for everything. Recently we went to the council, to sort that out. So that my daughter gets power of attorney, because of the signatures, yes? I can’t sign things anymore! I can’t even do that!”

(P5-II)

Some of those who had a hypothetical WTD for the future explained that this wish served a function for them. They said that it gave them the feeling of still being in control of their lives when confronted with increasing loss of autonomy. Some of them said that they were members of a right-to-die organization, so as to be sure of “keeping the last door open” to be able to decide for yourself (P34-II). Thinking about the option of hastening death in future expressed a need for the security of having an option of last resort should the situation became unbearable. Advanced care planning was therefore also extremely important. Some said that an open discussion with their physicians about the prognosis and about healthcare options, including palliative sedation and the reassurance that they would not have to suffocate, was extremely important to them in counteracting a WTD.

Social interactions.

Several social aspects influenced what people with a neurological disease wished with regard to dying. Observing the suffering of other people with the same illness often brought people with ALS or MS to wonder what kind of development, symptoms or state of health they themselves would find unbearable. Sometimes these observations gave rise to the expression of a hypothetical WTD. One man with MS, remembering a friend with MS who spent months in a state of dementia in which she did not recognize anyone, said: “No. I mean, if I realized that something isn’t good any more like this [i.e. the dementia in his friend with MS], then I wouldn’t want to live any longer.” (P32-II)

Some neurological patients with a WTD told us they were worried about being or becoming a burden to family caregivers due to increasing dependence and the high need for care. Most patients were aware of the impact of care on their families. One woman suffering from ALS, and mentioned above (P8-II), explained to her husband that she would want not to be resuscitated, so as to spare him and herself years of suffering in which he would have to care for her: “because [breathes] there would be years of suffering ahead, for me and for you, I said, because he has to look after me, he isn’t free either then. It took me a long time to make him understand it, but I think it got through.”

However, more often, interviewees told us that strong family bonds and loving relationships were perceived as supportive, and counteracted a WTD (P5-II; P9-II; P32-II II 30ff). Several patients told us that even if they had a WTD they would not take their own life, because they did not want to inflict more suffering on their loved ones, or simply because they wanted to enjoy time with them as long as they could. In the course of their illness, some experienced their families as counterbalancing their weakening physical function and saw this as supporting a strong sense of belonging that deepened during the experience of illness. One man who lost his voice due to ALS and who refused electronic speech support relied on his wife to ‘translate’ what he formulated (‘my wife is my voice’) (P7-II).

However, there were also stories of relationship breakdown, pre-existing couple conflicts, and families who experienced major tensions because of illness. One patient expressed a WTD at the point when his wife told him he had to move to a nursing home within six months. The blunt conversation, and the idea of being sent to a nursing home, made him think “that I would be shut away, like putting the rubbish out.” (P15-II) At the time of his wife’s decision she had been caring for him for at least 8 years, and in the previous 2 years he suffered from complete spastic tetraparesis and aphonia, communicating via tablet. For her it had been full-time, round the clock work. The strain of caregiving over such a long time and continuous conflicts in communication between the couple (possibly also provoked by changes in his personality due to the illness) added to pre-existing couple conflict.

4.2. Wish to die and the experience of dying in patients with organ failure

People with organ failure experience their dying in the context of a disease with a progression associated with ups and downs, crises followed by stabilization at a slightly lower level of functioning. These patients told us that the continuous and repeated demand to cope with recurrent health crises required enormous energy and motivation from themselves and those around them. Research often reports that these patients stay strongly focused on survival and overcoming the next crisis, and they (as well as their healthcare professionals) have difficulty acknowledging the proximity of dying [53, 57]. However, our study patients were undergoing intensive medical treatment. According to clinical assessments, as the Gold Standard Framework, they all were in their final period of life. They complained that the phases of stability between crises were shorter, their physical function was decreasing, and most of them were clearly aware that death was coming nearer.

Intentions.

Some patients with organ failure and WTD (P6-II, P11-II, P20-II, P26-II) made an active request for help to hasten death during an acute crisis, others because of a significant deterioration in their health (P29-II). Like the other groups, their WTD were dynamic and were continuously weighed against the wishes to live that were also strongly present for most of them. After the experience of an acute life-threatening health crisis, however, alongside their wishes to live many of these patients also developed a hypothetical WTD for the future, wanting to avoid having to go through another crisis.

Some patients had more concrete plans to hasten death that were important to them for at least a period of time: a woman with pancreatic insufficiency (P11-II) first contacted a right-to-die organization and asked them to reserve a prescription for the barbiturate (the common procedure of these organizations). Under slow recuperation but still in weak health, her acute WTHD turned into a hypothetical WTD in the event of another crisis. Another patient with cardiac insufficiency (P26-II) mentioned that he had made a suicide attempt by excessively drinking water to provoke a stroke, after his urologist had explained this risk of complication. Subsequently he agreed with his physician to concentrate on palliative support only and to refuse any further curative treatment. But there were also some patients who wanted to fight to overcome the next crisis until the very end (P2-II).

Motivations.

Patients reported that coping with a life-threatening crisis required enormous amounts of physical and psychological energy. Some explained that they had already accepted that they were ‘dying’, and found it difficult to readjust and continue living. The burdensome experience of previous crises (e.g. acute respiratory crisis) and the fear of having to go through another made some patients consider the possibility of hastening dying, and some then decided to let death happen at the next crisis.

What some patients with organ failure found particularly stressful was that they felt as if they were ‘hanging between life and death’. They wanted to be able either to live or to die, but not to live with recurrent crises at ever shorter intervals, a life that some described as an ‘intermediate state’: “I said, I can’t stand this: either die or live, but not this in-between thing.” (P11-II).

Asked about the reasons for her acute WTHD, the same woman said that she had a hard time imagining engaging in life again:

P: If I have a relapse, a bad one, then I’ll do it [assisted suicide]. Then I’ll set it in motion. That’s my son, he’ll set it in motion.

I: So what happened, to make you decide you want to die now, you want to go to EXIT[right-to-die organization]? What triggered that?

P: Because I thought, I can’t bear it, starting life over another time. Going through it all again. (P11-II).

Others explained their WTD by saying that they perceived treatment as too stressful or that it would reduce the quality of their life too much. An 80-year-old man experienced the hours of dialysis not only as extremely “boring”, but said they prevented him from participating in significant social activities in his nursing home, compromising his quality of life until the point that he sometimes wished to die. Another man (P26-II) found his multimorbidity becoming so complicated that it led to a situation in which the treatment options for particular symptoms mutually excluded each other. He described this as very tiring and as forming the background to his WTHD:

“You know you come to a point, as I said, where you run out of puff… And afterwards I’ll get heart problems, later on. And then they told me, I shouldn’t drink so much anymore. And previously, with my prostate, it was: ‘Drink lots, it’ll wash the stuff out!’ Because, I always had blood in my water, from time to time, didn’t I. And that was the clincher. So I said: ‘Then I’ve got a problem! If I don’t drink anything, down below. If I drink too much, up above. How am I supposed to do that?’ Then my doctor said: ‘Yes, that will be your problem. In future.’ Won’t it? And then you start to ponder and think: Why? You could also do it like this. And so it’s simple: we would like there to be a bit of reality, if possible. Everyone has to die. Up to now I haven’t found anyone who doesn’t (blows his nose). That’s why I say–so–you can be for it [WTHD], you can be against it [hastening death].”

(P26-II)

Social interactions.

Patients who reported having expressed a strong WTD to their physicians during an acute crisis said the physicians rejected it at that moment and did not accede to their requests to withdraw therapy, for example. These physicians held that such a decision required thorough communication and longer reflection than was possible in a state of crisis. One person who came to the emergency department with an infectious exacerbation of advanced COPD said that the physician ‘at that moment broke his will’ (P20-II), because he refused to follow his patient’s request to stop treatment. Retrospectively, however, the patient agreed with the physician’s decision. At some distance of time from the event, the same patient told us in the interview that he now had conflicting wishes regarding dying: on the one hand, he acknowledged that life was increasingly difficult and that he was close to death. But he said he had promised his wife to stay with her as long as possible. He also wanted to care for her as best he could. And he described himself as a candle, saying he was waiting “until the great wind blew him out” (P20-II).

Even though these patients lived with a great burden of illness and treatment, which often also caused significant life changes and demands on their family caregivers, the concern about being a burden to others was mentioned less often by our interviewees in this group than in other patient groups. This might have come through the small number of interviewed patients, but might be interesting to investigate in future studies with bigger samples.

4.3. Wish to die and the experience of dying in frail elderly patients

In the interviews, frail elderly people often described their life world as increasingly complex and wearisome: organizing the daily routine was becoming more and more “complicated”. Even small activities were more demanding. As mobility and concentration decreased, patients tended to organize everything well ahead of time: “Well, I always have to find out more about how I can manage all this. […] I used to be able to cope with it all myself. Just slowly.” P31-II. They were aware of being in need of increasing support and more dependent on others, which often resulted in their institutionalization in a care facility. Having been torn out of their familiar life world with its accustomed rhythms, they spoke about the experiences of alienation and loss, especially during their first time in a care facility. But even more than their outer world, they said they experienced their inner being as “complicated” (P30-I). What made their inner life complicated was often to do with changed thought patterns, as they frequently experienced recurring thoughts, past memories and forgetfulness. They often noticed a shift in or loss of their social roles, feeling less important and recognized by society. They saw their activities as less meaningful and happening more slowly than those of younger people. Taken together, all of this made them tired: “And I was just mentally overwhelmed. I’m not as strong as I once was.” (P31-II) Loneliness, alienation from the rest of society and the loss of meaningful activity played the most important roles here.

Intentions.

Many frail elderly people experienced the loss of family members and friends, but also saw their own death coming closer. Approaching death was thus not an abstract event, but something they related to and pondered about, over and over again. As in the other patient groups, frail persons (28-II, 30-II, 31-II, 33-II) also expressed a variety of intentions in WTD, ranging from sporadically expressed WTD without any wish to hasten death (P28-II), to hypothetical wishes to die at some point in the future (P31-II), to concrete requests to hasten death (P30-II, P33, II). And like other patient groups, the interviewees often experienced a WTD alongside a wish to live, or the acceptance of dying. The increased frequency with which some of these interviewees repeated their WTD during the interview (especially for hypothetical WTD or WTD lacking the idea to hasten death) seems to be specific to this patient group. In some of these interviews the interviewees had circular or repetitive thoughts and the WTD was expressed repetitively.

Motivations.

We hypothesized that the repetitiveness also served to acquaint the patients with and negotiate ideas and wishes about dying, to find their own attitude towards it, and to adapt to this final phase of life.

In addition, these expressions were also connected to other features of their experience of being old and frail, such as fatigue, loss of cognitive and other functions, and a level of decreasing interest in life. One woman frequently repeated that she would like to die soon, and during an acute pain crisis she even developed a WTHD. She said she wished to die because she felt overburdened by everyday activities and decision making and felt her inner life world was complicated: “I thought: well, now, now I can’t go on any more. I’m so finished. It’s all so complicated inside me.” (P30-II). She said that she had difficulties integrating the radical changes to personal life that came with old age, especially the continual losses of what was once important to her and to her self-perception. She compared getting old to ‘going backwards’ in personal development, which seems to imply a loss of capacities as well: “When you have […] to relinquish things piece by piece in old age, it’s difficult up here. In your head. That’s what [bothers me] most, it’s really a matter of life. […] If that’s life… you’re born. You have all these years. And when you go back, all that goes backwards again. And you have to experience so much where you think, no, that can’t be possible. […] It’s really not easy!” (P30-II) She also felt that nothing in her life really interested her any more: “I just hope that it doesn’t last much longer. It no longer really has meaning for me, you know. I’m not clinging to anything. […] I have no more desires. It’s here, but do what you want for all I care. It doesn’t mean anything to me anymore.” (P30-II)

Other elderly and frail persons did not feel at home, or disliked being in a nursing home, and said that this was the basis of their WTD: “Oh, I’d like to die now. I’d like to die now, and I hate the nursing home and the doctor said I should change [homes], but I can’t change any more. It’s too late. And it’s like this in every nursing home. Nowhere is it, nowhere is it, it’s more or less better, but um… um… it’s like this […] it’s not at all easy to exist in a nursing home.” (P31-II)

One of the most recurrent themes in a WTD of frail elderly people (and other patient groups) was shame about being dependent on others, and the fear of being a burden in a physical, psychological or financial way, as this woman who worried about being a burden to her children said: “I’ve constantly thought, now, ever since I wasn’t so well any more: Oh if only I could just die. Even if only because of the costs.” (P33-II)

Social interaction.

WTD were significantly associated with changes in the perception or self-assessment of patients’ own social role. Some motivations mentioned above are linked to social interactions including assumed or real reactions of the surrounding world to the elderly that influence the way they wished to live or to die. Some of our interviewees felt their life was no longer socially significant and therefore worthless, feeling that they were not needed by anyone, or that they could no longer contribute meaningfully to the lives of others. Some underlined that since they had been socially active and cared for others all their life, the dependent life they lived now was particularly difficult for them–as this woman said: “But when you’ve just been there for others your whole life, and then you have to relinquish things piece by piece in old age, it’s difficult. […] well no, what am I here for actually, and the children are grown up, they have their own life, you don’t have anything to say any more. So I could just go, I think I could just go. […] I’m … I’m not needed any longer.” (P30-II)

Some frail elderly people associated their WTD with a fear of being a burden to others. One woman lived alone and had to call one of her children in an emergency during the night. She repeatedly stated that she wanted to die because she felt that her needs and those of her children clashed: “I called my son at one or two in the morning, whatever, for him to come and help me go to the toilet. That’s always very awkward, I did that for about two weeks. For two weeks I had to call on them at night without wanting to. She’s got a household and she [daughter in law] goes to work, and it’s very awkward for me.” (P33-II) In many comments the burden of solitude and isolation was clear even though not often mentioned directly.

4.4. Wish to die and the experience of dying in patients with cancer

The cancer patients we interviewed were well informed about their advanced disease. One striking thing about the illness narratives of people with cancer was that many of them deployed similar metaphors in referring to their experience of illness. The metaphor of ‘combat’ was especially frequent: the tumor as the ‘enemy’, the illness against which one must ‘fight’ with all one’s strength. Participants often said that they had fought for a long time, mostly with enormous effort up to the point where they were told or realized that treatment was no longer effective and that the ‘battle was over’. Like people with neurological diseases, cancer patients talked about turning points where dying was (re)considered: at the initial diagnosis, after the first relapse, when writing a living will, or when opting for consistent palliative care. These points were also decisive for the development or reconsideration of a WTD.

Patients reported that they found ‘having cancer’ as particularly socially burdensome. A female patient aged 54, with carcinoma of the upper jaw for 20 years and breast cancer in remission for 10 years, described the moment her second tumor was diagnosed: “I can believe it, yes [that someone would feel the need to take their own life]. I came out of the hospital after the diagnosis of cancer and thought, this is what someone who commits suicide feels like.” (P21-I). Another young female patient, 34 years old, with breast cancer (P19-I), spoke about herself in the third person when negotiating cancer, prognosis and dying–as if she were speaking of another person. In the relative’s interview, her sister added: “They [persons with cancer] are people of flesh and blood, with fears, with worries, with uncertainties, up to their neck in catastrophe–so not just the big "C" for "cancer" but also "C" for "catastrophe". […] There are a lot of worse diseases, but just that word [cancer] … If a person hears they have cancer, just that alone is devastating, absolutely devastating! For the families as well.”

Similarly, non-cancer patients referred to cancer as an illness that was even more frightening than their own pathology. A patient with cardiac insufficiency said: “Yes, I think especially, if I were to get cancer. […] That would be a catastrophe for me! […] For some reason I have a horror of that. […] You know, there are some things that one just has a horror of, and you can’t overcome it. […] Yes, yes, cancer of course has a bad reputation.” (P2-II)).

Intentions.

In cancer patients’ wishes to die we found different intentions, which we have described elsewhere more in detail [7]. They ranged from looking forward to dying but without any intention to hasten it, to a concrete and real desire to act so as to hasten death. Somewhere in between were hypothetical wishes, which contained the condition ‘if … then’. Here, we looked at tendencies in these intentions, which relate to the subjective experience of the cancer trajectory. We observed that hypothetical WTHD, located in a future when something unwanted occurs, played an important role for cancer patients. Many cancer patients we interviewed were members of a Swiss right-to-die organization, even though they often emphasized that it was only to have an option in case things became worse or unbearable: “I signed up for EXIT, purely for safety reasons, in case I wanted to pull the emergency brake. […] I am signed up to EXIT, I sorted that out almost at the same time as the hospice. EXIT would really just be an emergency handle and not because I particularly wanted it. It would be only if I felt I couldn’t get off this train. It wouldn’t be because I actually wanted that.” (P5-I)

More clearly than in other groups, people with cancer seemed to have more imminent ideas about hastening death. Many of them even took actions to accelerate their dying, by making a concrete request for help to hasten death (e.g. to nurses; P20-I), by asking for sedation to hasten death (P12-I), by withdrawing life-sustaining treatment with the idea of accelerating dying (P21-I), by stopping eating with the intent to hasten death (P30-I), by contacting a right-to-die organization and reserving a barbiturate (P13-I; P29-I), or by actively attempting suicide (P32-I).

Motivations.

As we have described in more detail elsewhere [63], there was a wide variety of reasons, meanings and functions in the WTD of cancer patients, but not necessarily only in relation to their experience of illness. Here, we focus on those aspects that seem characteristic of the experience of being ill and dying of cancer. Many interviewees wished to die because of the high physical and psychological burden of symptoms such as pain, dyspnea, chronic nausea, fatigue, anxiety or depression. They wished to die so that death could put an end to severe suffering, to a situation that was seen as an unreasonable physical or psychological demand, or to end a life they felt was now without value.

Many expressed a WTD at decisive turning points in their illness, as described above: the first diagnosis, the first relapse, and the decision to bring forward palliative care (hospice etc.). For example, this woman of 34, the mother of a toddler, described the moment when the physicians told her that curative treatment for her breast cancer would no longer be helpful:

“You know, I have battled with this stupid cancer for a year and a half. I really tried all the operations, tried all the chemo, and as long as there was even a tiny bit of hope, just the tiniest bit, I still travelled to Lausanne to have an operation, I did everything, but the moment they said, we can’t do any more for you, I said, okay, now it’s finished, now I can’t fight any more, now I don’t even want to fight any more, I would like to die now, I’d like to go now. That was quite clear for me.”

(P17-I)

Some people with cancer told us that their very clear prognosis of dying left them existentially with a lack of perspective, hopeless and speechless, which made them want to die. Others said that the clear certainty of approaching death made it difficult for them to continue to wait until it came naturally; they wished to bring on death so it would happen faster:

“This is no quality of life for me. (…) I just find it a shame that I still have to lie around here for so long. You know, someone else could use this bed. Yes, I mean, I don’t know why this has to be so prolonged.”

(P17-I)

It is notable that this young patient also had a strong wish to live, which she explained in terms of her hope of cherishing good moments with her family and with her self-perceived role as a mother, daughter and spouse.

Several patients explained their WTD as due to physical suffering and the lack of any prospect of getting better. A woman of 64, with ovarian cancer, told us one week after attempting suicide by taking benzodiazepines:

“I’ve been really unwell in the last couple of months. And yes, sometimes a good day, but then bad, bad, bad. You know, if you feel ill for days, and you can’t eat anything, if you’re almost throwing up when you just smell food, then I thought, there’s no value in this any more. I just want to go to sleep. […] I just thought, I can’t go on any more. And the feeling sick doesn’t get any better […] every day is just torture, isn’t it?”

(P32-I)

As in other patient groups, the feeling of being a burden to others often underpinned a WTD. Interviewees talked about the many different types of burden they believed they had inflicted on others: time-consuming physical care, emotional distress (sorrow, fatigue, worry), but also financial pressures, or illness-related nuisances such as foul odors, stoma or tubes. One lady with an exacerbating breast cancer told us about her WTHD:

“Yes, well, I thought umpteen times, I’d like to have someone from EXIT come, so I signed up, with Dignitas as well, um, because I thought: yes, well, if it becomes so unbearable that, that everyone around me has to hold their nose. That was the worst, I think, then I wanted to, well, break off the exercise.”

(P4-I)

Some hoped, therefore, that their death would free others from their burden. Others told us they experienced a WTD because of feelings of shame (of being dependent, of having a distorted body, of being incontinent) and of being exposed to what A.W. Frank called the “will of the body” [66], meaning the arbitrariness of illness with uncontrollable consequences for the person’s life.

For many patients, autonomy and self-determination were important issues. The WTD was sometimes understood as an act of regaining agency, by determining when it was enough or the moment of one’s own death. But among the meanings attributed by patients to their WTD, autonomy was only one among many others and often not the primary motivation.

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Written by Tauzilkree
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